BIGSPD

TW: Brief mention of self-harm

So it feels a bit weird to be writing a blog singing the praises of a conference – conferences are supposed to be grey, boring and a bit of a chore. But BIGSPD isn’t…so here I am blogging about it.

What is BIGSPD? For a start, its pronounced “Big Spud”, and as a full-time hater of potatoes, I’m pleased to report there was not a spud in sight, big or small. BIGSPD stands for “British and Irish Group for the Study of Personality Disorders”.

When the consultant psychologist of the therapeutic community I was in (Acorn) first mentioned BIGSPD, I had two main thoughts.

“Big Spud” – I bet there are some psychiatrists out there finding themselves hilarious for thinking up such a humorous name.
Well thats going to be a hot bed of stigma, “what shall we do with those problematic, manipulative attention seekers” and all the other negativity that goes with the term “personality disorder”

Needless to say, I had no interest in it at all. Some Acorn staff had gone to BIGSPD with a poster presentation during my time there (with an equally humorous name) and it didn’t sound like my sort of thing at all.

So when he suggested – after I had been discharged from Acorn – that I take a poster myself to present at BIGSPD. I didn’t think this was a particularly bright idea. But I did the poster (a little feedback study gathering the thoughts of people with Borderline Personality Disorder (BPD) and the impact of activity on their recovery), annoyingly it got accepted, and I got given a free service-user place and I was supposed to go.

I was fairly convinced it would just be a room full of a couple of hundred clones of this consultant psychologist (who for the record is a lovely man who I have continued to teach and work alongside with in the 7 years since I left the TC). That there was no reason for me to be there as a non-professional, definitely still very mad person. I steeled myself up for a couple of days of ostracism, feeling inferior, feeling like an imposter, and at the very least, being incredibly bored (I mean, research is dry AF right?). At this point I hadn’t worked for several years so even being in a professional environment was a weird concept. I even self-harmed the night before in an attempt to not be able to travel to Cardiff in time. A&E were irritatingly efficient that night and I found myself stitched up, in the car with my mum going down to BIGSPD 2018 in Cardiff. (Additional moot point – who turns up to a conference with their mum in tow?!)

It got off to a great start as I walked into the entrance foyer to a buffet (Eating Disorder trigger) being kept warm by flamey things (PTSD trigger) and I had my first experience of living the experience of having lived experience in a professional context.

Absolute imposter – I had no idea why I was there. I snuck in and attached my poster to its designated board and proceeded to forget about it for the next 48 hours and hoped no-one would notice me, my service-user status or my poster. I wasn’t even a service user at the time as I had happened to have been forgotten in a CMHT reconfiguration so even my claim on that title was tenuous.

Something strange happened in the next couple of days.

People talked to me (cringe).

People wanted to collaborate with me on stuff (I have BPD – don’t get too close or I’ll burn all the bridges).

People re-tweeted my tweets on Twitter (I didn’t even know how to use the damn thing).

I wasn’t considered an “imposter” or that I shouldn’t be there. There were other people with lived experience there. And I was full-on inspired by them. They were doing research, working as peer workers, giving talks. And they were all people like me.

People didn’t hate people with personality disorders. They recognised that this group of people are traumatised, let down by society, particularly stigmatised in mental health services – this was a room full of people wanting to make life better for people with this label.

People wanted to hear my opinions, my experiences of services and having the BPD diagnosis. People encouraged me to use my voice to make change. People asked me about the other things in my life – I was a whole person here.

My mind was blown. But not as much as it was on the final day. I was sat having zoned out a little – they were announcing prizes and awards. It had been an intense 3 days and I was very much mentally full to the max. I became aware of people on my table turning to look at me. “Thats you! Well done!” someone said. I had no idea what they were on about.

My poster had only gone and got the highly commended prize in the poster competition! I had seen all the professional looking posters hanging up. My purple, too-small poster looked pathetic next to them and I had presumed no one at the conference had even looked at it. But apparently they had, apparently they liked it, and apparently it was good enough to be commended!

My life changed dramatically from then on. I returned to Sheffield with a new-found confidence, a belief that I could do something with this mess that had been my last 10 years. I had a voice and people did want to hear it. My poster got me noticed back in my own NHS Trust, and I was invited to talk about it with comms, and with various people at HQ. This ultimately lead me to be in the right place to apply for the role I’ve now held for nearly 6 years – Lived Experience Research Ambassador.

So fast forward to 2024. I attended my 5th BIGSPD in Belfast. And things couldn’t be more different.

I no longer feel like an imposter. I walked in with my head held high, knowing I had something to contribute.

I didn’t feel scared of people judging me for my lived experience or mental illness. To the extent that I did both my presentations in my socks – because I couldn’t think clearly with my shoes on – and that was cool, not “unprofessional”

I didn’t slink around the corners hoping no one would notice me. I got stuck right in. I presented twice, was involved in two posters, was on the team Tweeting about the conference, took part in video interviews (You can see these here and here), made a zine “A lived experience guide to navigating BIGSPD” which I scattered about the place.

Admittedly this has been a gradual process over a number of years. In 2019 I was still anxious, but enjoyed being a facilitator for a world cafe research event. In 2020 and 2021 the conference was affected by the pandemic. In 2022 I was very unwell with Anorexia – and in between two hospital admissions – but I did a research project about the long term impact of therapeutic communities and presented the poster of findings – which won an award for novelty and originality – this lead to me writing the whole thing up as a paper, coming up in another award and thrusting me back into the world of therapeutic communities and accompanying research. (BIGSPD gets you places if you let it). I remember this was the first BIGSPD I felt a little more confident – I knew people now and worked with a few outside of the conference. In 2023 I presented twice (particularly memorable was myself and Hollie Berrigan presenting on “The LX Factor: Hype or Hate?”) and introduced a friend to BIGSPD. I was beginning to feel super comfortable in the space.

But 2024 felt like coming home. I don’t know why it triggered a lot of reflection for me on how far I’ve come – despite a tumulus personal life, extended periods of time off work and all the other things – I can’t deny the 2024 Ellie that arrived in Belfast was worlds away from the 2018 one. I think the fact that other people at the conference commented on this change too was big for me – I received so much lovely feedback about how people had seen me grow over the years, were excited about what is next for me. And for once I was actually able to take these compliments on board. It was lovely to receive the coveted “Mental Elf” prize for my contributions to taking the conference “Beyond the room” on Twitter (in fact I think it might be one of my greatest moments).

It was a joy to present in two very different presentations. One as part of a symposium on Relational Practice – alongside Gary Lamph and Rebecca Nowland – presenting where we are at with the conceptual review of the term “Relational Practice”. We were joined by Neels Khawani-Connett and Rex Haigh talking about the Relational Practice Movement as a whole, and Jo Ramsden and Vicky Baldwin talking about mentalising as a core component of relational practice.

The other presentation I was involved in was part of a lived experience session which was incredibly hard-hitting and emotional but absolutely fantastic to be a part of. Myself and Keir Harding presented a talk called “Grr!!! My anger is no longer inappropriate! Changing from BPD to C-PTSD” – which talked about the impact and the practicalities of the diagnosis change from a clinical and lived experience point of view. Not that Keir needs his ego adding to but it was an honour to present with him as I’ve had the utmost respect for his work since I first encountered him at my early BIGSPDs.

Me and Keir presenting – Photo courtesy of Hollie Berrigan

I feel nutured at BIGSPD. BIGSPD provides a network of allies – especially (but not exclusively) others working in lived experience roles. It can be lonely at times working in lived experience roles, especially if you are the only one working in your area like I am. But having this network of people to fall back on, to grumble to when things get frustrating, or be inspired by, has been invaluable for my growth at work.

I appreciate this sort of environment is not great for everyone. I find lots of people and large spaces overwhelming – this year I had my loop earplugs in for most of the time, I did things that I knew helped me stay grounded and manage (took my shoes off, took time out when I needed, made plans for food when the food provided was overwhelming), I kept to my normal running schedule whilst I was there as I needed the headspace in the mornings. All of these things are OK and it was great to see others doing likewise. There was an addition of a dedicated quiet room this year, plus the space had a lot more “escape” areas – so it is getting better in terms of being a more accessible environment. The fact that BIGSPD is committed to funding 10% of the places specifically for people with lived experience each year is something that I have never seen elsewhere.

If you’re someone with lived experience, and are wondering whether or not you should come to BIGSPD – I really would encourage you to take the plunge and apply for a funded lived experience space. You never know where it might lead!

(Did I mention that there are also more than a few opportunities to let your hair down! Usually in fairly stunning locations – here we are at Titanic Belfast…but sometimes in not so stunning locations – previous experiences include on the floor in the “quiet” room in the early hours of the morning, Whetherspoons and “lost”)

Discovering Recovery?

In January I published one of the most popular blogs I’ve written on this site – “When Exercise Becomes A Problem”. Thank you so much for all the people that got in contact, to ask questions, to understand more, who were inspired to read more about the subject or think twice about what exercise might mean to people. I’m really glad it made an impact.

So I didn’t do a great job at following it up.

This is a bit of an update on eating disorder recovery, and exercise addiction.

Its been a difficult start to the year. There have been a variety of events and stressors in my life – many way beyond my control, which have significantly impacted my mental health and my ability to move steadily forwards with eating disorder recovery. I’ve suffered from massive setbacks in most areas of life at one point or another.

But I’ve learnt so much.

And similar to how a year ago, I learnt so much about self-harm because I was supported through an incident rather than having support/care/treatment withdrawn. I am learning a lot about my eating disorder because I continue to be supported despite the ups and downs and setbacks and relapses.

I have never had eating disorder treatment that has followed me through the ups and downs of my chaotic life. Previously care at home being chaotic meant I was unable to engage with eating disorder programmes (or they were unwilling/unable to engage with me) so treatment was terminated. Relapses in ED behaviours resulted in treatment being withdrawn. Mental health crisis meant that I was considered unable to engage. I’ve never had the opportunity to continue being supported in eating disorder recovery through these events. Until now.

And this has helped me start to explore what recovery means for Ellie, in the context of my chaotic life, the situations that are beyond my control and at times traumatic, my fluctuations in mental well-being. These things aren’t going to go away any time soon. Recovery for me means learning how to batten down the hatches to weather the stormy times. And right now, that involves an eating disorder team helping me work my way through those times, instead of jumping ship and leaving me blind at the helm.

I’ve always been told what recovery should look like. Being a certain weight, doing a certain amount of exercise, eating 3 meals and 3 snacks and a wide variety of foods, being weighed when it suited the ED team – not me… but now we are exploring what recovery looks like on my terms, and I’m still not 100% sure what that actually looks like, but the point is I’m getting to explore where I didn’t have the choice before.

Understanding recovery and exercise

My only interventions regarding over-exercise and my eating disorder previously have been total exercise bans. Which teach me nothing. Every single time, my exercise problem comes back worse than before. The back end of 2023/beginning of 2024 this had reached an all-time peak. My whole life was dominated by exercise. There wasn’t time for anything else, not friends, not family, not food, not work, not forms of exercise that I actually enjoyed and definitely not rest.

4 months on I’m maybe not where ideally people would like me to be regarding exercise and rest, but my attitude and understanding around it has changed significantly, and although I’m generally unable to rest, there has been some decrease in intensity and more importantly an increase in more enjoyable forms of exercise. I don’t feel quite as bullied as I did before, but I am still over-motivated to move and feel overwhelmingly guilty if I don’t.

What has helped?

We spoke extensively about my exercise. We spoke about it now and through the course of my life. We explored why exercise became such a coping mechanism. We spoke about what Ellie enjoys and what her goals are, versus what Anorexia would like me to do and what her goals are. They understood that being active is part of who I am. Instead of banning me from the gym entirely, we scheduled a meeting with the gym manager, myself and a member of the ED team. We talked about the problem at hand, we worked together to think of a reasonable plan, discuss what I did and how it was basically cancelling each other out – so I would never reach any of my own personal goals, and we met again with one of the personal trainers. I worked with the personal trainer for a couple of sessions to try and extract my goals from Anorexia’s, to learn about the importance of rest, and to have some accountability. Now that people at the gym knew my problem, that did help me think twice before going straight in for my rigid exercise routines. More people at the gym (both staff and other gym members) are aware of my situation – and are less likely to push me further than I should go, or to make unhelpful comments. I have at times walked away from a class when I have felt uncomfortable (for example a circuit that involved timing the exercise based on calories burned) and this has also been OK.

I really still have a lot of work to do but there have been some major changes. The main one being that I am not excessively on the cross trainer multiple times a day (or generally at all, though I do sometimes slip back into it for a couple of days). Yes I do exercise every morning and evening, but its varied – sometimes its a run, sometimes its weights, sometimes its a class, sometimes its yoga. I’ve even started skating and doing acro again. Because I’m not running every single day and being pushed forward by Anorexia’s bullying voice, I’m actually enjoying running more. I go to the gym for the social aspect, not just to burn calories. I feel part of the community there and have people I chat to and hang out with, its not just about the exercise anymore. On a recent trip to France to see a friend I got great joy out of running in the early morning April sunlight along the canals, soaking up the beautiful French countryside and feeling energised rather than depleted.

Understanding recovery and trauma

For the first time ever in eating disorder treatment I have been allowed to speak about trauma and how that plays a role in my attitudes towards food and my body. Of course there is still a hell of a lot I can’t and don’t speak about or even understand myself. But of the things that I do understand, or things that affect me, we are able to explore that and not brush it aside.

What has helped?

Acknowledging that trauma does play a significant part in my eating disorder and attitudes to food and my body. And that some of this is on-going. Understanding that some battles are best not fought, but thinking of back-up plans that keep me safe and healthy in those circumstances.

We have looked at the specific impact of my trauma-related inability to use heat-producing devices which means I can’t generally cook for myself. We explored which of these might be easier to address and settled on if I was able to use a microwave and an air fryer (I can already use a kettle) that this would provide me with so much more freedom over my food than I have had in years – instead of having to rely on others all the time. I touched a microwave for the first time in 5 years, and put a cup of water in and shut the door. This sounds like nothing to most people but for me its a huge step.

Unfortunately this has all had to be put on pause as I was living in an unsafe situation, but throughout this time my therapist has reminded me that we will be coming back to it, once its safe enough to manage. I’m constantly reminded that its still in their mind, and we don’t stop working on it entirely just because there was a wobble.

Understanding recovery and mental illness

Instead of turning me away at points where I am in crisis, they have gently supported me and let me know I can feel held. This in itself is massive. Even through a significant mental health crisis, where I actively tried to push away support as I was convinced I was a waste of time, a hopeless case and unable to recover – they refused to let this happen. Their absolute belief in me when I have none has gone a long way into me trusting its worth investing in this process.

What has helped?

All too often, having mental health problems and an eating disorder is a huge barrier to treatment. Eating Disorder services don’t like working with mental illness (especially in crisis or if risk is present) and mental health services don’t feel confident working with eating disorders. This time, things have felt more collaborative – me, my carer, my community psychiatric nurse and the ED service met together. They communicate with each other. My CPN has always felt a bit anxious about pushing me too far about eating disorder stuff, but (much to my dismay) the eating disorder service modelled how to be more assertive when addressing my eating and exercise. This has meant that try as I might, my eating disorder can’t run rings around professionals anymore. The same goes for my regular carer – she has been involved in my care and received a course of 1-1 carer sessions which has boosted her confidence in managing my eating disorder. Sometimes I wish all of this didn’t exist, so I could slip down the cracks and get on with what Anorexia wants me to get on with – but I know that the real Ellie is grateful for this deep down.

Understanding recovery and neurodivergence

There are aspects of me that are somewhat neurospicy. I struggle with change, changes of plan, rigidity (which is a problem when in my eating disorder but can sometimes be a benefit in recovery as I can also be quite rigid about “getting it right”), sensory stuff is a big issue for me, things feel “right or wrong” for no particular reason, I struggle with choosing things, I can’t handle eating with a big spoon. All things that can, and do impact my eating and my recovery. In the past I have struggled in some eating disorder treatment settings because I wasn’t allowed to eat with a small spoon (I have never eaten with a big spoon in my life, and my family are the same), prefer to sit in the same place when I eat, have very specific ideas about which foods go with what. And some of these things have lead to me being “unable to engage in treatment”- and there was very little wiggle room for accepting that some of these things were just me and how I am, not eating disorder behaviours. Being asked to eat dessert after lunch is hard enough, but being told I have to eat it with a big spoon that makes me physically shudder (nails down a chalk-board sort of thing) is nigh-on impossible. For the first time, we’ve talked about these things and how they might influence what the reality of recovery looks like for me

What has helped

Acknowledging that some things are eating disorder related and some things aren’t, and some things do get worse when I’m more anxious so are more likely to be prevalent when I am less well. In particular we have discussed how much I struggle with decision making, choosing what to eat, managing the supermarket and all the choices there etc. In the past treatment has often encouraged full recovery to be something that involves eating a variety of different meals each day. But this is overwhelming for me, because there are too many choices, too many decisions and I literally will melt-down because of decision fatigue, not because I don’t want to eat. So we discussed that maybe a way forward would be to choose meals for breakfast, lunch and tea that I then eat for the whole week, before making a new choice for the next week – therefore reducing my decision-making from over 20 times a week, to once.

I can spend an epic amount of time in supermarkets, just looking at food, but when it comes to doing an actual food shop I flounder, there is too much choice, its too overwhelming. So I’ve started shopping at Lidl. Not only is it cheaper (handy on an unstable income) but most Lidl shops are laid out more or less the same, and there is not a particularly wide choice of each different food. When things are going smoothly now I can do a quick Lidl shop for my weekly food plan in 20 mins, without help. Which was impossible before.

For the first time I’ve considered how my sensory issues with clothing might affect my body image and therefore recovery. I’m quite well known for not wearing leg coverings – and this is largely a sensory thing, I really struggle with the feeling of material on my legs. So I go bare-legged most of the year. I also struggle with trousers, so I wear leggings, shorts, skirts and dresses. But I’ve realised this extends a lot further, and social pressure to constantly wear different outfits, or the have the right clothes, maybe doesn’t fit for me. I really struggle with the sensations of different materials, bands, fits – and it makes me hyper sensitive to my body. I’ve started to pay more attention to my clothing from a how it feels point of view rather than a how it looks or how socially acceptable for the situation it is. Its not quite that straight forward but it has helped my body image, to not constantly be able to feel every inch of my body all the time. It has also helped to reduce the options of clothing I have to wear. Though I have realised I have a problem with buying black yoga/cycle shorts – different ones can feel very wrong or right at different points, even though they look the same to everyone else.

Understanding recovery and body image

Although I have had body image input in the past its either been in a group setting where I’ve felt too ashamed of my body to really speak about it properly, or I’ve simply been too distressed by my body to engage in exercises. Body image takes up about 95% of my headspace, is something that never really gets any better when I’m in a remission period, and is nearly always at the forefront of my mind in relapse.

What has helped?

We have talked about body dysmorphia, we’ve talked in raw detail about how I perceive my body, and how this can change literally within seconds. How I find life so disconcerting when I genuinely don’t know what I’m going to see in the mirror. My self-image is very distorted (and fluctuates) and I do know this from previous interventions that have given me concrete numbers to evidence this. But despite that, I can’t really ignore what I see for myself, and my body image and how I see myself continues to distress me significantly on a daily basis. I’ve been allowed to cry and be upset about this without fear of judgement, or people saying “it doesn’t matter what other people think” etc. Because it does matter what I think. I don’t know if I’ll ever get to a better place with body image, from the age of 3 I’ve had problems with it. But at least I have a non-judgemental space to be honest about how I feel and explore that a bit more.

Understanding recovery and relapse

I’ve had an eating disorder for over 20 years. And I’ve pretty much had issues with most eating disorder behaviours during that time. Although I’ve reached periods of relative “wellness”, this is never sustained very long. And in particular, I’m unable to sustain this independently without carers or support workers supporting eating.

What has helped?

We have started to explore why I am unable to sustain “recovery” for long. Is it because I am striving for something thats unrealistic for me? Is it because I define recovery as a very fixed term with fixed criteria? Is it because we don’t plan for the inevitable ups and downs in life (which are particularly accentuated in mine) and only plan for a nirvana where I have all the things I need for recovery easily accessible? Is it because we’ve missed some major things before? A lot of the points I have discussed above have all helped me start to understand some of these things that mean I repeatedly relapse.

I have relapsed during this course of treatment – quite significantly at points. But because I’ve been supported through this, helped to explore and climb my way back out, I’ve started to understand more some of the specific triggers for relapse. Some of these include housing instability, wanting to gan back control in a life where I have little control over a lot of aspects, burn out and not prioritising food…and many more. Some of these are more easily dealt with. If I can’t prioritise food and manage decisions around food then I can go back to basics, mechanical eating, just get the fuel in. And thats OK for a period of time. Some of them are harder to manage – my social situation remains chaotic and sometimes I just simply don’t have the means to get access to food, or the headspace.

When I’m relapsing I don’t always have the desire or means to get out, or belief that I can turn it around. Sometimes climbing a hill I’ve already climbed feels too much. But at the moment I have people pointing out where I’ve already anchored points up the slope – so all I have to do is reach to grab them and its easier to pull myself up than before. But I still need reminding.

I still have a long way to go. I’m not in the greatest place with eating at the moment but I am much wiser than I was at the beginning of the year. I’m really grateful for the support I’ve received and I am determined not to throw it all away. I do want to show that there is hope for people who have been unwell for a long time. That sometimes by doing things a different way we can find that life worth living.

Locked Out in Lock Down

Trigger Warning: Suicide. Only read if you feel able to.

We were all hit square in the face in 2020 by the pandemic and the lock down, and it affected every aspect of life for everyone. But as most people are aware – the impact of the pandemic was unequal across society – those from diverse cultures, lower economic background or those with pre-existing conditions were generally more affected in one way or another. Social care was hit massively during the pandemic. As someone who was relying on social care to make my day-to-day life manageable, I felt this impact hugely.

Its taken me a few years to feel that I can write honestly about this subject. Bits and bobs may have been leaked out over time, and those that know me well personally will know what my life was like during the pandemic. But a combination of hopelessness, knowledge that things couldn’t change, gaslighting and also just the fact that people straight up didn’t believe that such a situation could occur right under their noses, meant that I kept a lot of the facts to myself.

I have never experienced lock down.

But thats impossible! I hear you say – the whole country was subject to it. And yes, it wasn’t like I wasn’t around during lockdown. But it was that I was more locked out than locked down that was the issue. Still now, in 2024 – I find myself struggling to empathise with the rest of society – their experiences of days and days on end at home, looking forward to their one hour outside to exercise, making TikToks, sour dough, learning a new instrument, being bored seeing the same four walls – all the good and bad aspects of the lock downs, I didn’t really experience that.

Let me give you some back story and context.

Complex mental health problems cause me to have a lot of issues accessing buildings and living independently – over the years I’ve lived in a lot of mental health units, care homes and crises houses for extended periods of time. I have also been homeless for months at a time, or sofa surfing amongst friends. The beginning of 2020 saw me living in the Crisis House for 6 weeks (which I felt was long at the time – little did I know that 2 years later I’d be living there for 6 months but thats a bit of a spoiler). I had spent the last couple of years in hospital/homeless/in care homes and mental health units. I’d had some really difficult experiences and all I wanted was to be able to live safely in my own home. It seemed like a solution had been found. I was given 112 hours a week of social care funding for personal assistants (PAs) to help me live in my own home (I can’t set foot inside the door without someone else there so these 112 hours literally translate as 112 hours in my home a week). Fantastic! Except, for those of you that are quick and already done the maths – you’ll realise there are 168 hours in a week. I was missing 56 hours. This wasn’t ideal – but coming from the situation I’d been in for a number of years, and in January 2020, this felt doable. I work, I do things most evenings, I have a social life, it would be really complicated to work this out 4-6 weeks in advance for rotas. But it would be doable.

Another important fact in this story is because this funding was direct payments, I was the employer of the PAs, responsible for recruitment, management, training, rotas, timesheets, submitting these to payroll etc. The only thing I got help with was an agency who managed my pay roll. This is a lot to deal with for anyone. Especially someone with complex mental health problems, a job, and limited access to their home.

February 2nd 2020 I finally moved home with a small team of PAs in place to help me. It was complicated, I wasn’t used to living in a house or running a home, everyone was new, but it was exciting and I loved inviting friends round and living in the area I wanted to live in and having all my belongings in the same place for the first time in 4 years. Managing my life and the rotas was stressful but we were getting by. Generally a majority of the hours were used up at night to allow me to sleep in my house, so I didn’t get many waking hours at home.

And then 4 weeks in, it became apparent that this weird virus was causing major problems in the world. I started to hear word that a lock down might happen, and people would have to stay indoors. I a) didn’t think this was actually likely and b) knew I didn’t have the means to do this. The week before lockdown began, we were told to work from home. My PAs stopped coming to work. I panicked, but luckily my very very good friends Rosie and Andy said I could stay with them whilst this (what we thought at the time) temporary virus thing blew over. I’ll be forever indebted to them for doing this for me.

I work in the NHS in mental health care, so although I’m far from the frontline there was plenty to be doing at work – definitely not the stuff I usually did but we were very busy, and trying to do this at a time when none of us had worked out Zoom.

I rang my care co-ordinator on the Thursday of that week. “The country might go into lock-down – what do I do because the PAs won’t work and I can’t go home?”. I didn’t get on with this care co-ordinator – but more on that later. “You’re making mountains out of molehills and catastrophising”. She put the phone down and refused to help me work out a plan. The following Monday Boris told us we must stay at home.

I was still at Rosie and Andy’s, but I couldn’t stay forever. I also had no clue how I was going to work as I couldn’t work from home as I didn’t have enough PA hours to be at home during the day even if they did agree to come back to work.

After a really difficult meeting with the PAs, where one of them domineered over the rest and pushed them into not working. One PA contacted me privately and said she was happy to work her few nights a week, this was really complicated contamination-wise but I started to spend some nights at home and the rest at Rosie and Andy’s. In the meantime, I found a solution for work – I could work in a different office that was more accessible for me, with a colleague from another team. We ended up sharing an office for most of 2020. Phil, you don’t know how grateful I was for this companionship, normality and workspace.

Eventually the PAs were told they did have to work and someone somewhere had created some rough guidance around personal assistants and home-based support workers. However, this now meant I still had 56 hours a week not at home. Which was illegal.

I started working 5 days a week even though I’m only contracted for 3. It was the only legal place I could be and there were plenty of things to be doing and it felt fine to be volunteering my time.

So my weeks set up a pattern. I would leave my house when the PA finished the night shift at 8am, I would remain out of the house until 6pm when the next PA came on. Some days I would go to work, some days I would just be floating around a deserted Sheffield. I came back in, had tea, got things ready for the next day out of the house, went to sleep, woke up at 6am, got ready, had breakfast and went out at 8am. Day after day after day.

I did this almost every day from March 2020 to 1st December 2021, I was out of the house from 8am-6pm (slightly less at weekends), with no-where else to go.

Simple things became a huge problem. Being out was illegal at the time so I was breaking the law on a daily basis. It was really hard to find toilets I could use. Eventually supermarkets did open their toilets but I would have to queue outside with everyone else doing their shopping just to use the loo (I live in an area with limited places to go outdoors for that sort of business). Everything I thought I might need for the day I either had to take with me, or leave in a storage box in my back yard. Sometimes it was raining and I was just out in the cold and wet all day. Sometimes I got abuse from people when I was sitting in town, or trying to find somewhere slightly sheltered. I got told I was selfish for not being at home. I took to cycling a lot – because if I was exercising people would think I was doing my hour of exercise and have less of a problem. 4 years later I’m struggling with a significant exercise addiction as part of my eating disorder. Sometimes the PAs couldn’t come to work or didn’t turn up. I slept in a bush in the park on these occasions, despite still having active issues with my stalker who lived in the area. The night they had the party at Downing street I was sleeping in the park, after my day of working for the NHS, I dragged myself out of my hedge (looking exactly like I had been dragged out of a hedge backwards because that was what happened!) and traipsed back to work the next day.

My care co-ordinator came into her own in the levels of abuse and gas-lighting she sent my way. She no longer works for the Trust. But I found myself with no mental health support as any contact I did have with her was abusive and often involved shouting at me down the phone for up to an hour.

I had some issues with PAs too, one was financially abusing me and a lot of others came and went very fast. Their job was difficult and unstable so I don’t blame them. But the ones that stuck at it – well I’m indebted to them too. They worked so hard to support me in absolutely abysmal conditions for me and for them, I’m so grateful and many are still friends to this day. They fought really hard to try get more hours for me, as did friends and family, but we were met with no change.

During this time I understandably struggled with my mental health. And had 2 suicide attempts in 2020 and another in 2021. The two in 2020 were only a month apart and were met with more abuse from my care co. As soon as I was medically stable I was discharged back into my outside life, despite having been in resus less than 24 hours before. I’m actually proud of myself for not falling back into old habits of self-harm that could have given me the safe place to be of hospitals. But barring a few issues here and there, my self-harm was actually very low during this time.

South Yorkshire Police and the British Transport Police at Sheffield Station were also life-savers during this time. It wasn’t long before they were aware of my situation and didn’t penalise me for being out and about when I had no choice. If they came across me distressed (because also I had nowhere private to take my emotions during this time), they would help calm me down, bring me home and give me 20-30 minutes in my house, making myself feel safe and maybe getting me a cup of tea, and helping me work out how I was going to fill the hours before I was next able to return home. The staff and police at the station too understood my situation and would often invite me in for a cup of tea when it was cold and let me use the toilets at the station or hang out in the shelter of the foyer when it was raining.

I had a slight improvement of the situation around December 2020 for a few months. My old care co left (thank goodness) and a lovely new one came in her place (it took me a long time to trust her because of previous experiences but she is still my care co now and is outstanding), and around the same time my situation came to the attention of someone higher up in the community mental health team. For a while I had a bit more flexibility over how I used my funding and had a bit more time at home. But this didn’t last very long and I ended up back in the same out for 10 hours a day every day situation.

By summer 2021 I was done, I felt like there was nothing that was ever going to change. Life was not sustainable. I was exhausted and couldn’t continue like this. My social care situation wasn’t changing. I gave up. After a seriously suicide attempt that involved multiple methods, all 3 emergency services and resulted in me being sectioned in another city briefly, I had a week at Crisis House. Nothing changed. I went back into the same situation. But by now my PAs were flagging too, their mental health was taking a beating and a lot would go off sick, leaving others to cover shifts, meaning they would go off sick and the cycle continued.

Having to leave me every morning, knowing I had no place to go, sometimes very distressed or unwell, must have been awful for such caring people. They gave the mental health services an ultimatum. Give us the resources to help Ellie properly by the 30th of November or we will walk on 1st December. I was fully behind their decision to do this. I hated seeing others suffering because of me.

On the 1st December 2021. I got up, opened my advent calendar (a seeds one – thanks Mum!) and went to work. Knowing that I wasn’t going to return home. No solution had been given, the PA rota stopped there. I went about my work day as if nothing was awry. But as the day wore on I realised I’d buried my head in the sand a bit too much and had no clue what I was going to do after work. My phone rang at around 2pm. I could stay at Sheffield Crisis House until something else was put in place. The relief was huge. For the first month or so, being able to be inside during the day was a total novelty. Unfortunately, that was the start of a whole new set of battles – the saga does continue.

Overall, I spent 20 months, during the most COVIDy bits of COVID, locked out from 8am-6pm every day. I am proud of myself for surviving, I am proud of myself for actually excelling at my work during this time, for having a major part in the building of a roller skating community during this time. But the toll it has taken is massive. Only last week I had a day where I had no care in place and had to be out all day – I couldn’t cope, everything comes flooding back. In adverse situations sometimes we just have to get through it – and the trauma comes later. The impact of having nowhere to go during the pandemic for such a long time has been devastating personally – I already had complex trauma and this just added even more to it. My ability to trust people reduced massively, my ability to ask for help also took a huge hit. Even now, when people try to help me I don’t understand why they are doing it – because I received so much abuse about it around this time. A formal complaint made about the care situation was not upheld and I still don’t know why, I think because I held back a lot about what was actually going on. I was ashamed.

It was hard to know what to say to those around me, it was a lot of pressure on my friends – if they made a plan with me and had to cancel, it would leave me with nowhere to go. I didn’t want to speak up too much about it because of where I worked (the same organisation I received care from), I was worried I’d get sacked for telling people the reality of my life. Some people flat out just didn’t want to believe that the conditions I told them I was living in was true.

I still struggle, when people talk about stuff from lockdown and I just can’t relate. The whole experience was incredibly isolating. But also I am so grateful for those that played a part in me getting through that time – and you know who you are.

Appearance Matters?

Its almost considered a rite of passage in modern society to have some hang ups about your body. We’re constantly bombarded by adverts offering products for “flawless skin”, “banishes wrinkles overnight”, “lose arm fat”, “burn those pounds away”. Despite the more recent body positivity movement, we are still saturated as a society by this weird pressure to have at least some hang ups about your body. Its almost not OK to love the skin you were born in.

I’m not denying that this is a problem for a large amount of the population – and that most people will have some issues with their body to some extent. But when do these little hang-ups and gripes become a serious problem? Issues with body image are fairly common, but at the most extreme end of the spectrum is the less-common body dysmorphia – a mental health condition where the suffer spends so much time worrying about a particular aspect of their body that they perceive to be “wrong” in some way, that it severely impacts their ability to live a normal life, with sometimes catastrophic results. These flaws are not perceived by anyone else, only the sufferer and can cause significant distress and even lead to suicide, Body dysmorphia is often associated with eating disorders but not always, the sufferer could for example have such a belief that their nose is the wrong shape that they go to extreme lengths to cover it, up, try to change it, constantly check it in the mirror. They are not vain, they are in distress.

For some sufferers of eating disorders, body image is never an issue – after all, eating disorders are not ultimately about weight – but about things a lot deeper down than that. For some, they may have great body image before the onset of the eating disorder, struggle with body image whilst unwell but get back to a better place when their body and brain is adequately nourished and physically healthier. For some, body image is an issue for a lifetime, and recovery means battling these issues every day for most of your life.

I am one of those people.

I first began to perceive myself as “too fat” aged about 3. By the time I had reached junior school (aged 7-8), this had become a major issue that took up most of my thinking time. I struggled massively with my thighs and my stomach in particular. When we had to sit cross-legged on the floor in assembly I would cringe at the way my legs bulged behind my knees when I crossed (anyone who has legs and is able to cross them will notice that this is perfectly normal), I would sit with my elbows covering my knees, or sometimes pulling my t-shirt over them (which would serve the double purpose of covering up my stomach) – a behaviour that always got me told off by the teachers. In school orchestra in Year 4 I can remember sitting there, horrified at the way my thighs splayed out on my chair, when I couldn’t see that other peoples’ were doing the same. PE lessons were a constant source of stress. Not only did I have to do my spectacular changing over to my PE t-shirt without anyone seeing even an inch of my tummy, but the actual lesson of PE filled me with dread as my perceptions were that fat people couldn’t do sports and that was A Bad Thing. As a self-perceived fat person this meant I was constantly presuming others were judging my sporting ability based on my fatness.

Objectively the situation was very different. I was a competitive swimmer and trained 4-5 times a week. My legs were muscle not fat. Old photos show a perfectly normal-sized child (admittedly with some seriously dodgy haircuts) – wearing baggy clothes because she was a “tom boy” when in actual fact it was because these covered up my body more.

I vividly remember the first time I wore a strap top, I was so self-conscious. Now I had the tops of my arms to worry about too.

Moving on to secondary school didn’t make things any easier. My first secondary school had no uniform and clothing was an absolute nightmare. I felt self-conscious in everything, and spent years in oversized t-shirts with a sweatshirt tied around my waist to cover my “stomach rolls” and my bum. I was delighted when, halfway through year 10 I moved to a different secondary school with a uniform. A combination of not having to decide what to wear, feeling more comfortable in school polo shirt and jumper, and the “mosher” trousers phase (40cm diameter on my trouser leg hems) meant my body was fairly hidden. Though I still couldn’t think about much else aside from my fatness. Puberty definitely didn’t help the whole situation.

After that I developed Anorexia aged 17 and started self-harming age 18. I don’t think I have had a day in my life for at least the last 30 years where I have not felt fat, ashamed of my body and conscious about it in every way. I have been a multitude of different body sizes since then – underweight, overweight and all over the spectrum of normal weights. I hated myself at every one. Even when I am underweight, and I may understand this factually, and be able to see a variety of things on my body that confirm my under-weightness… I will still be hung up on my double chin, the saggy skin on my stomach, the fact my arms have some flesh on them which splays out when I squish them to my sides.

I come across other people who complain about their bodies (something that I rarely do out-loud at all in public or to many people except on a one to one basis with a handful of people I really really trust – mainly due to the fear of someone turning round and agreeing with me) but can laugh it off at the same time or not feel the need to sit and worry about it. Or who feel vaguely guilty about eating something but then just carry on with their lives. I think this where the line between normal issues with body image and pathological issues with body image is. Whether or not you can carry on your life because of it.

My life is impacted in every single way by how I feel about my body from the moment I wake up and every when I’m asleep:

My sleeping position (on my front so my stomach is squashed)
It takes me 10 outfit changes every single morning (if not more) to finally feel acceptable enough (and just because an outfit was OK yesterday or this morning doesn’t mean its OK now) – and thats nothing about fashion, its simply do I look fat in it or not.
Conversely sometimes I am so overwhelmed that I can’t change my clothes and will wear the same thing day after day.
Never being sure when I walk past a mirror what I will see in it. For me my perception of my body varies wildly throughout the day. I can feel OK about it one moment and turn round and see something grotesque and disgusting the next. Every single time I look at a reflective surface I have no idea what I’m going to see. I can’t picture myself and what I look like in my mind’s eye at all.
Constant body checking – this might involve pulling at my clothes, touching part of my body, looking at mirrors/windows etc. I’m pretty much doing this all the time.
How I stand/sit and how I hold my body. If I am having a conversation with you I will be conscious of how you are definitely perceiving my fat bits and will be doing things to try and cover them up or hold myself so I look less fat. I will often sit with a pillow or cushion in front of me to cover my stomach, or fold my arms over it or pull my knees up if I’m sitting down.
Worrying about my size, shape and weight every second of every day. I often lose track of conversations because I’m too preoccupied with it.
Crying and feeling hopeless when I think about my body. I can even feel suicidal (and have attempted suicide) over this.
Self-harm can sometimes be around body image for me (especially my face).
And obviously, any eating disorder behaviours, including exercise are driven by my want for a different body.

Even when I’ve been at the point where I have been really physically unwell due to my low weight. I am still convinced I am somehow fat. Right now as I write this I am thinking I am fat. Nothing anyone will ever do or say will change this. Complementing me often makes things worse, I can’t take a compliment on my body – I whole-heartedly don’t believe it and don’t see it. For me, I am too fat. That is a fact. And that fact never changes, regardless of my size.

I’m not vain, I’m not into being stylish or having the latest clothing and fashions. But I am obsessed with how I look. I don’t judge other people and their worth as a person based on their body or their body size, I couldn’t care less what you look like. But I care what I look like – even if I haven’t washed or changed clothes for weeks and look a state and might not look to you like I give a dam about how I look, its way more complicated than that.

There are treatments that can help with body image problems and body dysmorphia. Usually there are root causes – bullying, trauma, other mental health conditions, societal pressure etc. and these are what are often needing to be addressed for any long-term change. CBT can help keep certain behaviours and thought patterns in check. Medications such as anti-depressants can also help. I do know people that have got to a much better place with their body image issues so change can happen. Often if the body image problems are associated with an eating disorder, once the brain is appropriately fuelled some of these issues resolve themselves naturally.

For me I’m not so sure. I have had a lot of input into my body image issues over the years, but there has been very little change in my perception of myself, if any. I think for me it is still a case of there are a lot of unresolved, very deep down issues, so surface-level treatments such as CBT don’t do much for me. I am trying to come to terms with the fact that recovery from my eating disorder might still involve having body image issues. I’ve been to quite well places with my eating disorder and still struggled immensely with preoccupation about my body. But when I think too hard about that fact it makes me quite distressed so I try not to.

It can be hard to know what to say to someone who struggles with body image. The chances are if they’re not talking too much about it it is troubling them more. I tend to advise that people just avoid commenting on bodies and size/how well someone looks etc. at all – its not useful or necessary. Things like “I love that colour on you” is more helpful if you do feel the need to comment – things that can’t be directly related back to the person’s body. Even if you are saying something with good intentions (“you look well’ is a common one), chances are that person’s brain is twisting the words around to back up their perceived ideas (for example, “you look well” for me means “you have put on weight”.). There is no point saying “well I think you look beautiful” or “you don’t look fat to me” – as it probably won’t change what that person is feeling. But validating their feelings (not agreeing with the perception but agreeing that the feeling it provokes is hard and that you are there for them – for example “I can see that thought is really upsetting to you. I’m here if you want to talk about it” could be helpful).

Letting someone know that you love them/like them as a person/appreciate their friendship regardless of how they perceive themselves is nice.
Accepting their feelings and not judging them as vain or obsessed, or presume that they are judging you because of it.
Offer space to talk
Acknowledge feelings rather than thoughts/perceived ideas. “I feel fat” is not a true feeling – its a thought. “I feel fat and that makes me feel ashamed” – has a true feeling in it, shame – and thats what you need to focus on.
Practical support – sometimes body image issues can interfere with every day life – do they need support going out of the house, shopping, choosing an interview outfit?
Celebrate successes – have you noticed your friend body-checking less? Let them know you see the hard work they’re putting in.
Learn their triggers. If there are specific comments or scenarios that trigger your friend’s body image thought patterns try to avoid them, or stand up for them if someone else is triggering them
Don’t get drawn into debates about how someone looks. This is not helpful.
Boost their confidence in other ways which isn’t about how they look.

When Exercise Becomes a Problem…

Trigger warning: Eating Disorders, Purging, Hospitals, Exercise.

NB: I will refer to myself as a fat person with negative connotations in this blog. This does not mean this belief that fat = bad relates to other people. The only human being I believe this of is myself.

*Takes a deep breath*

“My name is Ellie. And I am an addict”

Not something most people probably expect to hear from me. And my addiction isn’t what people default to thinking about when they think about addictions.

I’m addicted to exercise.

Most of you are probably reading that thinking “Big deal – don’t see the issue there”, “I could do with a bit of that exercise addiction”…and things along those lines.

Too much of anything is never a good thing. And that includes the holy grail of “things that are good for you”…physical activity.

Anyone who knows me knows that I’m an active person, I skate, I cycle, I do circus stuff, I like being outdoors etc. And thats totally true of me and who I am. Most people who know me will also know I have Anorexia. And these two things don’t always mix well.

I’ve always had a complicated relationship with exercise. As a child I did ballet and swam competitively. Ballet in particular has a reputation for being less-than-helpful for a child’s body image and the development of eating disorders. PE at school was horrific, I was shy and not good at any of the sports they did at school (the half-term of swimming lessons we got in Year 5 was my only time to not feel like a sedentary, worthless, fat blob). And all of this, paired with a complex relationship with netball and the politics that came with it at university – meant that for quite a while I avoided sports.

By the time I was an adult I had a full-blown eating disorder. And I have always displayed purging-type behaviours. My “go to” being self-induced vomiting but also other behaviours such as laxative abuse. However, over the years, exercise started becoming one of these behaviours.

Exercise saved my life, when things got very complex with my mental health – one of the ways out of the pit of darkness was re-discovering physical activity on my own terms – skating, circus skills, outdoor things. I am in no way saying exercise is bad, nor that it is bad for me in particular. But everything in moderation.

Over the years though, my attitude to exercise changed, even though I was doing activities because I genuinely enjoyed and was passionate about them, at the back of my mind was how many calories I was burning, and that it was something to keep my weight in check, that I needed people to know I wasn’t lazy, or that I needed people to know I was doing something about my fatness. Because exercise was so important in managing my mental health and well-being, I started to see this as one of my only ways of coping with difficult feelings. I was yearning after a toned-svelte body. Or more to the point, not to feel “fat”. Or more to the point, not to feel emotions. The girl in the mirror repulsed me, when I looked at my body I could see nothing but rolls of fat and bits that I hated. I was pushed forwards by my hatred of my own body.

The first time this became a proper issue was around 2018, when in a relapse of my eating disorder I became obsessed with skating as much as I possibly could. Although I came out of this relapse in terms of eating, I also came out of this relapse with a fairly high idea of what “normal” was for amount of exercise. But it was in check, I was doing stuff I loved and was sociable and fun, and I was fuelling my body properly. Things over the next couple of years perpetuated this dependence on high levels of physical activity – including another relapse of my eating disorder, an absence of anywhere safe to be during lockdown when the only reason to be outside was “partaking in exercise”, a loss of my driving licence which meant that my main form of transport was walking or cycling, and a huge part of my identity being “Ellie the roller skater”.

Fast forward to 2022. I’m in a really crappy life situation and had very little control over it. Perfect time for Anorexia to rear her head again. And she did this with all guns blazing. Combined with restriction of nutrition and fluids, purging and laxative abuse, my already high levels of exercise remained high – my body couldn’t handle all this and I ended up seriously physically unwell in hospital multiple times that year, coming close to dying at one point. My brain became more and more obsessed with burning calories – a starved brain will go back to its pre-historic ways of working which is to notice a lack of fuel and encourage us to move – as back in caveman days if we were hungry we needed to go hunting. In today’s modern day society that translates to excessive exercise and movement. In hospital after a near cardiac arrest, I was convinced I was off on a 4 hour bike ride the next day. My starved brain couldn’t understand why this physical activity wasn’t compatible with my body’s physical situation. Throughout this year I continued to exercise against medical advice. I honestly didn’t understand why it was a problem, exercise is good for you. I’m fat, need to lose weight, I’ll continue.

At the end of 2022 I was so physically unwell that I had no choice but to give up exercise. At that time in my life I could barely sit up for more than 10 minutes at a time. At the beginning of 2023 I began to get a little better physically and improved my intake and cut down other purging behaviours, I had some support from the eating disorder service but I was still banned from any physical activity and this was never fully addressed before I reached a “healthy” weight and was discharged from the service. Straight away I launched myself back into cycling everywhere, skating and other things that were a normal part of my life. Straight away I also started restricting. In July I started running. Every. Single. Morning. Rain or shine, injury or no injury, late night out or early night. I still ran. I have never really run before in my life. I was delighted that I went from hardly being able to run a few hundred metres to running non-stop for 30 minutes in a matter of weeks. I was finally getting fit and healthy! Maybe I’d no longer be a fat person.

Spurred on by my first park run (sub 30 minutes, 2 months after taking up running), and positive feedback from the world around me “you’re so dedicated”, “you’re so determined”. I continued. I got worried about the winter and that I would get fatter as it got darker and colder so I joined the gym. The person doing the induction commented on my ability to hold a plank “forever and a day” and my visible shoulder muscles when trying out the weight machines. This spurred me on even more. People seemed to be perceiving me as a fit person not a fat person. Gosh. They must be half-blind, I’m just a fat, lazy person masquerading as a fit person – I’d better do more to prove myself. I. Could. Not. Stop.

As my exercise increased, my intake decreased. I had been subsisting mostly on fruit and vegetables for several months – but eating in front of people from time to time when going out for a meal. Everyone thought I was doing well with food. Nice to see you out and about. Great to see you doing the physical activity you love. I. Could. Not. Stop. It would be letting others down.

But I wasn’t loving it. I would be wishing that someone would stop me. Physically hold me down and stop me having to go out and run in the rain. I would be crying in the gym. Constantly aching and feeling horrific. I turned down more and more social events. If it wasn’t physical activity orientated then I wasn’t going. Then slowly this balance tipped even more. Even my previously loved active hobbies like skating and circus were replaced by running, cross trainer and random gym classes. I managed to keep doing things like yoga – but even this I would be doing an excessive amount of times a week on top of everything else. Each week I had to do more than last week, to prove I wasn’t lazy. I. Could. Not. Stop.

I perceived nothing wrong with what I was doing. The reason I hated it was because I was still too fat and lazy. I would find any excuse as to why I needed to do my exercise. Things started happening that were quite scary. Collapsing after park run. Finding myself on a dark country road in the rain, no bike lights, muscles not responding and brain hallucinating police cars going past again and again. Spraining my ankle after a morning of being bullied by my eating disorder to run from class to class. Cross trainer, run to yoga studio, hot pilates class, run to gym, weights, yoga class, run, run back to gym, dance fitness class…I carried on going despite having fallen, sprained my ankle and spent 10 minutes crying on the floor in the woods because I was worried I wouldn’t get my exercise hours in that day. I. Could. Not. Stop.

The recommended weekly physical activity levels became my daily minimum. Hours in the gym before work, followed by more activity after. If I was working from home then I would pop across to the gym in gaps in my day. If I was working from the office it was chance to get an extra cycle in. But I still had to sit down to do my job. I was genuinely considering giving up the job I loved in order to do one that was more physically active. I. Could. Not. Stop.

I referred myself to the Eating Disorders charity. They took me on straight away. The care was so Ellie-centred, so trauma-informed, so much more than I was expecting or thought I deserved. But the exercise is a problem. People are telling me its dangerous, I’m at risk. I have a history of a dangerously low heart rate and other cardiac issues and these could happen again. But I don’t understand. I’m not on death’s door like I was a while back. I understand I do a lot of movement – but I have my reasons for it. My intake was increased and my exercise just increased with it. I’m sitting in meetings with professionals who know me well, who I trust and respect. They’re all on the same page, telling me this is a problem. My eating disorder doesn’t have anywhere to hide and I squirm throughout the meeting with nowhere to escape to. But something in my mind makes me feel like I must be pulling the wool over their eyes in some way. Can’t they see I’m fat and lazy. I. Can’t. Stop.

The last few paragraphs are all things that have happened in the past few weeks. I’m still in the middle of it. My whole life is exercise. Last week I counted 27 hours of exercise – and I definitely didn’t include everything. I. Can’t. Stop. I want nothing more than to recover from my eating disorder. And I’m almost happy to be told I need to eat more. But I can’t stop exercising. I can’t imagine how I would function without it, what I’d do with my time, how I’d manage my mental health, how my body would balloon in size, how my body image would just get worse. People probably think I’m being less active because I am not turning up to the skatepark, to work, to acro practice – but in reality I’m stuck doing things that burns calories more intensely. I hate having to spend hours on the cross trainer because thats what my eating disorder tells me to do. I will turn down a skating session with friends in order to do that. I hate having abandoned all my friendships and social life. I hate that I only wear sports clothes and that it took me 4 months to dye my hair and even when I did it I had to go to the gym to work out with bleached hair before I had time to dye it properly. But I hate my body even more than all of these things. And thats what keeps this going. I. Can’t. Stop.

I have read a bit more recently on exercise addiction. And I do see everything in myself in the writing and the criteria. I do understand I have a problem. But I don’t know how to solve it. I’ll take a little advice from exercise professionals – but many don’t notice the problem. But I struggle to take on board what everyone else is telling me.

Exercising a lot is only ever perceived as a good thing. Society encourages us to do more – chastises those that don’t move enough and putting those that push their bodies to the physical limits on some sort of super human pedestal. The feedback I get from people I come across in my day to day life who don’t know the extent of the problem just give me more encouragement to keep moving. Recovering from a restrictive eating disorder is hard enough when society is full of diet culture and you have to go against the grain of what your head is telling you and what society is telling you, but most people can conceptualise that an anorexic needs to eat more. The general population struggle to conceptualise that its possible to be too active, and my brain does too.

I don’t know what happens next. And I’m not writing this blog with any words of wisdom of how to help someone who is addicted to exercise, or putting themselves in danger because of it. I’m also not writing it asking for advice. I think I’m writing it to raise awareness. Ultimately the change needs to come from within me, but I’m not sure I’m there yet. I don’t want to throw away this opportunity I have of excellent eating disorder support which is right for me. I also don’t want to throw away my life and the good stuff that could happen. I have genuine things I would like to do in life and some of these involve physical fitness – do a sprint triathlon, more trekking and bike packing. But anorexia is so strong, so all consuming – the thought of fighting my way out terrifies me. I’ve been in some dark and dangerous places with my eating disorder in the past and this doesn’t feel like one of them, although I’m told it is and also that my “baseline” for “I’m fine’ is spectacularly low compared to most people. It feels like a horrific thought to have to fight my way out again. But I know if I carry on it will only be harder to get out.

I don’t often write my blog posts in the moment of something being an issue. Most are retrospective when I have had chance to process the subject matter. But I felt that I maybe needed to blog at this point to show how confusing eating disorders can be for the sufferer. We have so many conflicting internal ideas of right and wrong. So I apologise for the raw and rambly nature of this one. But I hope it educates and gets people thinking.

Work is a privilege not a right

I’ve been in paid employment continuously for 5 years.

This might sound like a zero achievement to most people. But for me this is massive. At the age of 36, this is the first time I’ve held down a substantial job for more than 6 months in my entire life. I don’t have enough fingers (or maybe even toes) to count how many jobs I’ve either lost or had to leave because of my mental illness over the years. Sometimes this has been a collective and supportive decision between me and my employer. Sometimes I went to work one day and was just never able to return as my circumstances took a nosedive. Sometimes I have been unfairly dismissed, discriminated against or experienced fear and stigma from my employers when they realised about my mental health.

“We can’t have parents realising we employ someone like you, it would ruin our reputation” said the 8th-best British International School in the world.

“Its dangerous for you to be working with my daughter” said the parent of a young lady with autism that I had had a really good working relationship.

“We’ve applied safeguarding measures to you – you can’t work with children under 14, be in charge or be alone with any of the girls” said the voluntary organisation I had spent 25 years of my life devoted to. I couldn’t even keep a volunteer job.

My mental health scares people – over and above the effect it has on my ability to work. I never have been, nor will I ever be, a danger to children or other people. But the terrifying monster of “mental illness” conjures up such strong negative connotations for many employers that they couldn’t bear to have me working for them – regardless of the fact that I was reliable, hardworking, and often well liked by the young people I worked with. I have been told repeatedly by people from a variety of professions and walks of life that I would never work again or contribute meaningfully to society.

In 2015 I was admitted to a psychiatric ward straight from my own work as an OT assistant and support worker on a different psychiatric ward. I didn’t return to work for over 3 years.

My CV and my confidence was in tatters. Now with a 3 year gap, on top of all the other short jobs and gaps of varying lengths – I didn’t look or feel particularly employable. I’d come out of a year-long admission and struggled with homelessness and getting the right support for my mental health in general – it didn’t seem likely that a job was going to happen any time soon. I had so many complex access needs too which meant I couldn’t do a lot of the jobs that I had trained for in the past.

But something that was helping, was that when I had been sectioned on an acute ward in 2016 (where my notes say “Ellie is a negative and disruptive influence on the ward environment”). I met someone who became one of several key people that changed my life forever. The lead OT on the ward saw something more than the chaotic, disengaged, risky individual that everyone else saw. In OT they noticed how much calmer, more engaged, more eloquent I was – when I had things to do, a purpose, I wasn’t bored and most importantly was away from the triggering ward environment. He took a chance and asked me to be service user representative on a therapeutic activities development group in the Trust.

I’d never heard of anything like this before. I was just a troublesome patient. I didn’t have any views worth listening to. I sheepishly went to my first meeting – dressed in my PJs with a hoodie over the top, not washed for 2 weeks and with steristrips on my face – definitely feeling like I wasn’t supposed to be there. But to my surprise, I found that people kept turning to me to ask “Ellie, what do you think about this?”, “In your experience, would this work?”. People actually wanted to know and listen to what I had to say. People valued my experience.

I remained loosely involved in this group from a distance when I was in my long-term admission which was in another city. A couple of months before I returned home I met with the OT and he invited me to start to volunteer in the OT department on the ward. I was anxious, but this turned out to be a valuable grounding experience in the chaos that was my life after hospital. Despite not having any semblance of a fixed abode, routine or safety in my life. Every Tuesday I would turn up at 9:30am and feel useful and valuable. It was the anchor point to my week.

As time went on and I got more established and confident, I began a small semi-structured interview feedback project with other patients on the ward about their experiences of activity provision on the wards. I was trusted to write, conduct and analyse these interviews with guidance from the OT lead. At the end of the project I had a whole host of new and different insight to feedback to the department. I was asked to present this at a larger Trust meeting. People were interested in what I had to say.

One thing lead to another and over the next couple of months I became more and more involved with different projects and groups across the Trust. I now didn’t only have one day a week to keep me anchored in my still chaotic existence – I had multiple.

So, a year after leaving hospital, when an intriguing role was advertised “Patient Research Ambassador – Medical Education and Research”, and I had 5 e-mails from various people suggesting I should apply. I actually, for the first time in a long time, felt like I might have a chance. It fitted well with my skill set (my undergraduate degree was in primary teaching) and interests. But I was still uncertain as to whether any workplace could manage my access needs and still chaotic mental health.

I got an interview. The interview was scheduled over the fire alarm test time. Damn it! Fire alarms are a big trigger for me – I knew I couldn’t possibly go to the interview now. But again, nudged on by the OTs still encouraging me – I took a gamble and rang up the interviewer and explained my situation and asked if the time of my interview could be changed. The first reasonable adjustment of many over the next couple of years.

I took the interview. No fire alarm involved. And for the first time in 4 years, later that day my phone rang with the call – I’d got the job. A proper job. With a salary. In the NHS. I was fairly convinced that it wouldn’t come through – there were still too many complicated aspects of accommodating me in the workplace. And my home life was still unstable – surely I couldn’t have a job if I didn’t have a home?

5 long months of navigating access to work (the least accessible thing ever), occupational health and all the other bureaucracy, on the 11th December 2018 I started my role. My managers had used the delays from the bureaucratic process to invite me in as often as possible, to get to know my needs, to plan for my access requirements. So when I started, we felt fairly prepared.

The next couple of months were complicated. I lost my housing, went into crisis and was sectioned multiple times by the police in the first 5 weeks of starting work. my first time off sick was probably about 4 weeks after starting. I’d messed up. There was no way any employer would ever stand for this sort of chaos. I was just too much effort to have about.

But they persevered. I persevered. In the first year of my employment I was roofless at 3 separate points, I lived in 5 different places – 4 of which were mental health units – some of which were extended stays in crisis services that is totally not a conducive environment to manage work in, one of which was highly abusive and had a devastating impact on my mental health. Because of my instability in my personal life I experienced several crises, struggled to access support, had various periods of sick leave and got through several care co-ordinators.

But I still had my job.

Every time things went downhill I was convinced that I’d eventually get the call “this has gone too far now – you’re not appropriate to work” – but this never came.

And 5 years down the line – despite more complications, this call has still never come.

In fact, quite the opposite.

I now work more hours in a clearer job role. The role has developped, its place within the department and the Trust has grown and I’m even delighted to say that a second role like mine is being implemented.

I am a valued member of the team – valued for more than just my lived experience – but for my other skills too.

My team and my management remind me of this, even in times when I’m not able to work.

From day one (fire alarm gate) me and my managers have had an entirely open and transparent relationship. I never get anxious about letting them know things aren’t OK – because the likelihood is I’ve already been keeping them informed if something was on the horizon, and we’ve thought about ways of managing it. I never feel like I have to hide anything, or that I’ll let them down. In fact I’m more likely to let them down by not listening to my mental cues and pushing through with work I maybe couldn’t do at that time, rather than saying “actually, I’m not able to do this right now – here is how I’m going to manage it instead”

My mental health is supported at work, reasonable adjustments are made and these are flexible depending on how things are. And the best thing is – this isn’t even “special” treatment in my department – we all look out for our colleagues’ well-being, adjust and help each other out when the going gets tough. I’m not singled out as being radically “different” to my colleagues but at the same time people are mindful of my limitations and needs.

I’m helping reframe the idea that service users are service users and professionals are professionals – both can be true. I am equally a service user and an employee of the Trust at any given time – and that can be true of others too.

I am never made to feel like I’m not pulling my weight (even though I might feel like a waste of space).

Access to Work funding (although a faff to sort out) has allowed me to have invaluable access to work support workers which allow me to do my job without worrying about meeting my basic needs or access needs.

I’m treated like an expert in the things I know about, not just a service user.

I feel respected and trusted in a space where as a service user this hasn’t always been the case. It has allowed me to start to change the narrative around “Ellie the negative and disruptive influence” of years ago. I think the only time I might be accused of that now is when I’m in hardcore advocating for service users mode – challenging but professional.

Because other people have believed in me. And shown that they think I’m worth investing in even in times where I feel like nothing but a useless burden to society – my views about myself are slowly starting to change. I do have some value to bring to this world. To this work space. To this society.

To those that think they can never work again. To those that have been told they have nothing to give. It is not true. We can have good lived experience roles. We can have supportive employers. We can be service users and professionals at the same time.

Burn Survivor Weekend

TW: Self-harm, suicide, mental health crisis, psychiatric ward, burns, fire. This is a graphic post.

So it isn’t a secret that I am burned. It also isn’t a secret that part of my C-PTSD is centred around fire. And I’ve struggled for 8 years with the consequences of this. But its only this year, 2023 that I have accessed burns-specific support.

So why has it taken me so long?

The short answer is shame. The long answer I don’t think is possible to verbalise. But I came a huge step closer to that this weekend.

My burns were self-inflicted. At very low points in my life I have used fire – or other things that burn – to hurt myself. I didn’t need much help to feel incredibly guilty about this. But I (unfortunately) was helped along a lot by a rhetoric around me at the time that it was my fault I couldn’t control my “impulses” (my self harm is not impulsive, its compulsive – but thats another story) or my emotions. Why on earth then would I ever, ever think that I had the right to access support from the burns community – where so many people had no choice in what happened to them. When I effectively “chose” to be burned.

Although I speak openly about my mental health in a variety of context including education of staff, I tend to gloss over the “I set myself on fire” thing. Even in terms of living day to day with my PTSD I don’t easily volunteer that information – and although I may tell people that is connected to my PTSD – I don’t bring the actual event up that much. I struggle so much with dissociation and flashbacks thats its difficult for me to actively choose to think about it, let alone tell my story.

In 2015, whilst an inpatient in a psychiatric ward. I set myself on fire. I suffered from third degree burns on my torso and leg, and lesser-degree burns on my arms and hands. I also began to suffer with what was to become debilitating PTSD related to the event. 2 days after the fact, I was discharged to the community with little to no mental health support and set fire to my leg outside A&E a few weeks later.

A combination of me being unwilling to accept what had happened, unwilling to engage and a lack of support available or offered to me, meant that although I received the physical care I needed for my burns in 2015, I did not receive any of the psychological support I needed. I spent over 4 months in bandages followed by a year in pressure garments (a vest and a leg sleeve) before I disengaged with this too. I think also there is a presumption that if you have done it to yourself – it won’t affect you psychologically in the same way.

That is so wrong. For 8 years I have been actively disabled by my PTSD. I now know (though only from work done in the past year in therapy), that my trauma around fire and the feelings that came from the experience of being on fire – goes way back before November 14th 2015. In actual fact – its not that surprising – understanding what I do now – that fire was my weapon of choice. But still, despite starting to understand this my shame and guilt continued.

In April this year, following a series of events (including a Doctor refusing to suture my face because (in his words) “you have plenty of scars, one more doesn’t matter”. I finally gave in to the compulsion I had had since 2018 to create a burn on my face. I have had a long history of harming my face – also stemming from some specific trauma. I did not stop until that exact compulsion, and image I had had in my mind and tried to push away for so long, was complete. And this involved repeat incidents – in total I burnt my face using strong alkaline chemicals 7 times before seeking medical treatment. Burn upon burn upon burn until I knew I was done. When I had finished I had a 3rd degree burn the size of my hand on the side of my face. The right hand side of my entire head swelled to twice the size. I was admitted to hospital. We didn’t know if I might have lost some of the vision in my eye. I already hated my face – I’ve been actively hurting it and trying to make it unattractive to unwanted male attention for years. Now I was unrecognisable.

Swelling dies down. But serious burns don’t just go away. After nearly 6 weeks with a big, black patch of dead and burnt skin on my face, I finally made the decision to accept a skin graft. Medically it was a totally obvious decision. Psychologically, not so. Why would I do this thing that might make my hated face look better? Why would I do something that was looking after my face? I was already struggling with the care I needed to give my burns. Having healing (or not healing as was the case) burns is a full time job and even bathing it reduced me to tears every time and I struggled to do the facial exercises set for me by my OT. To make the decision to have the graft I did a lot of soul searching, I spoke to many people I know and professionals in my physical and mental health care, I looked deep inside myself. I really appreciated the friends that supported me through this time with dark humour. “Ellie’s dead face” became an entity in its own right. I knew, that making this decision would make or break where I went next. And eventually I took the plunge and on 9th May 2023 I had a full thickness skin graft – replacing the dead (and by now pretty stinky) face with skin from my right thigh.

I struggled with the surgery and the aftermath. The thought of someone having touched my face and had control over what it was going to look like terrified me. Part of me was worried it would look horrific and part of me was worried that it would look like a perfect face again. I don’t know which scared me more. Dressing changes were traumatic – I dissociate as soon as anyone touches my face and can become very distressed and volatile. But we managed it, with careful care from the burns nurses and my wonderful carer, Shami. I broke down before the first time I had to look in the mirror. But as soon as I did, something inside of me let me know I’d made the right decision – to care for myself by accepting the graft.

And this was the start of considering moving forwards. In a roundabout way I had to get burnt twice to start to heal.

Over the next couple of months I opened up more about fire in therapy. Signposted by the burns unit I first received some support from Changing Faces https://www.changingfaces.org.uk/ which I found really helpful, before eventually taking the plunge and joining an online support group for burns survivors. This was a massive step as I hadn’t accessed any support before in 8 years. But I still felt like I shouldn’t be there.

So I felt even less like I should be an attendee at Dan’s Fund For Burns (DFFB) Adult Burn Survivors weekend. https://dansfundforburns.org/ I made the decision to go but in my head I was going to back out. I couldn’t go. It was a place for real burns survivors, not people who had done it to themselves like me. How could I possibly have the audacity to be there when other people hadn’t had a choice in being burnt?

Even when I arrived, at a beautiful hotel in the Surrey hills, I was panicking. my anxiety was sky high. The first evening I was plagued with thoughts convinced everyone would be saying “she shouldn’t be here – she did it to herself, she doesn’t deserve to be here”. Even though everyone was lovely, I worked myself up to convince myself that when everyone found out the truth I would be thrown out and rejected. For the record – everyone was actually lovely and these are all my projected thoughts and fears! However, despite the lovely evening and brilliant pub quiz, I found myself dissociating quite a bit and struggling to stay grounded. My traumatised mind did not want me to be there. Although I really appreciated that everyone was talking openly about scarring and burns, I struggled to tell many why I had burns.

The Saturday morning started off (after a beautiful outdoor yoga session), with a talk from Polly, the founder of DFFB. She had been in the Bali bombings, where she had lost her husband, Dan, along with several friends. she subsequently set up the charity in Dan’s name that has raised over £2.9 Million in 20 years and provides burns support, befriending, financial support and more to people across the country.

After this, the programme said “Open Mic”. I wasn’t 100% sure what this meant, but it turned out to be an opportunity for people to share their stories.

And this is when the magic really began.

I am used to the mental health world. Where confidentiality means you have no clue what is happening for anyone else. Self harm, scars, stories of events, triggering topics and trauma are taboo. Judgement is rife (from service users and staff) and often people are oddly competing to story top or “be the illest”. Everything is incredibly censored. I became acutely aware this weekend that even when I am sharing my mental health story to educate – I censor it heavily for the sake of other people.

This was the exact opposite. People stood up with the microphone (or without, or sat down, or stood at the back – whatever worked for them), and spoke, honestly about their stories. Their injury, what happened, how they were burnt, how much they were burnt, the recovery process, trauma, people they’d lost, things they’d gained.

Even 3 months ago I would have not have been able to sit in that room. I have such a low tolerance for experiencing or even hearing about triggers without dissociating that I would just have not been able to be there. Or if I had I wouldn’t have heard what was being said as my brain tried to protect me.

But I heard every word. The room listened raptly to every individual who stood up there. Every member of the audience with that person on every step of their recounted journey.

And the stories, the stories were painful. They were raw. They were tragic. They were sad. They were uplifting. They were joyful. They were hopeful. They were humorous. Every single emotion a human being could possibly feel must have been felt in that 2 hour session. They were resilient. They were courageous. They were vulnerable. It was an absolutely privilege to be in that space. I won’t recount other people’s stories -they’re not mine to tell, it was a safe space for those that got it. It was an absolute honour to hear them.

Everyone had scars. And it didn’t matter if they were big or small. Visible or hidden. Whether the story was an international headline or a home accident gone unnoticed by the rest of the world. Everyone in that room had experienced their life changing forever. And the experience of continuing living in the aftermath of that event.

I’ve never met another person who knows what its like to be in on fire. Not like “shit I accidentally caught my hair and blew it out” on fire but engulfed in flames sort of on fire. That experience and the feelings that came with it are what plague and disable me every single day. And here I was in a room which was full of people who knew what that felt like (Disclaimer: this wasn’t everybody – there are plenty of other ways to obtain burn injuries – but there were a fair few). And just knowing that was healing it itself. I wasn’t alone in that experience.

I wasn’t going to speak. I didn’t think I could. It didn’t seem fair after hearing all those journeys. But there was a gap – and I somehow found myself at the front of the room. I honestly can’t remember what I said. Except I explained at the start that it was literally my job to talk about lived experience of mental health. But not my burns story, and I didn’t think I could do it. I took a deep breath and admitted to the room that unlike a lot of them, I had a choice in my injury. That in 2015, at a point in my life where I didn’t think I could get any lower, I took a lighter to my hospital night gown and set myself on fire in a psychiatric unit. I don’t really remember much else of what I said. Except that I got emotional. I am never emotional when talking about my story. I am entirely disconnected. I rambled on in what felt like a really incoherent babble before losing my way and returning to break down in tears in Shami’s arms. I’d for sure just turned a room of human beings on me – they must hate me now for what I’d done.

But then the lady in front of me turned around and squeezed my hand. The guy next to me said well done and thank you. From behind me a woman hugged my shoulders. Polly took the mic and said to the room that we all had a right to be there and deserved support.

Even me. The girl who set herself on fire.

The session continued with people telling their stories. The guy next to me got up and went to the front. He looked straight at me and said “I wasn’t going to come up. But then Ellie did, and I felt that I could too – because I too feel responsible for my burns”. His story was different to mine but he had the same feelings of shame, guilt and unreservedness because he felt it was self inflicted. After he finished speaking and returned to his seat we both told each other we were proud and shared a hug.

And in that 2 hours, everything changed. That anxiety and separateness and paranoia I had felt melted away. Straight after, and for the rest of the weekend people showed their support, and appreciation that what I did was brave. People asked more about self harm and how it worked. Another person came up and said she felt her injuries were self inflicted in a way too. One woman took me through her emotional journey as she listened to me speak – first anger towards me, then anger towards others, then empathy and finally pride. Everyone reiterated that I had as much right to be there as everyone else.

The rest of the weekend flew by. With more story sharing. Talking about scars and laughing about situations we’d been in because of them. Dark humour was rife which is my favourite way of coping with difficult stuff. There was an amazing dinner and dancing – people boogying away like no-one was watching. Because for once, no one was watching. Most of us were used to being stared at in some way because we look different. We were used to being the elephants in the room but now we were a whole herd of elephants. I wondered what the few other people at the hotel thought – being in the minority as they were not scarred.

Several more challenges presented themselves over the weekend. But unlike normal, I was able to face them head on. This weekend – where I had expected to be a dissociated, triggered mess, I was actually more grounded and in the present than I have ever been.

An amazing bunch of ladies were volunteering their time that weekend to give free scar massage. Burnt skin is very thick and tight, often in contracts causing mobility issues, pain and even limb loss. Part of scar management is massaging to help break down the scar tissue. its a different kind of massage than those you might get at a beauty place. Its something I find very hard and I think is something a lot of us are not great at doing for ourselves.

I don’t look at or touch or do anything with the scars on my torso. I’m fairly lucky as they are mainly on my ribcage they don’t cause me any mobility issues. I definitely don’t let others see or touch them. So I also didn’t expect to actually go through with my scar massage session. However Claire, the therapist who was working with me understood my fears and really put me at ease. It felt so alien, to let another person spend an hour caring for a part of my body that I resent so much for what it symbolises. But it actually felt really nice. Afterwards my scars were much paler and flatter, and to my surprise I found that I could breathe easier – I think my scar (which has contracted a lot) has actually been stopping my ribcage from fully expanding without me realising.

Anyone who knows me even a little bit knows I go to massive lengths (to the extent of being in danger or ending up homeless) to avoid triggers. But this weekend showed me that I can, somewhere deep down, do the things I avoid doing. And I did one of those this weekend.

I was sat on Saturday night between two women, chatting to one of them and we were about to retire for the night. She held a lighter out and asked me to pass it to the woman on the other side. “I can’t touch lighters” I said.

“Of course, thats fine” She replied. And went to reach further so she could pass it herself. She didn’t question my inability. she just understood.

I stopped her. No I can do this. I took the lighter and passed it to the next woman.

Everyone who knows me also knows that I go mute if I’m even slightly triggered. But after passing the lighter. I turned and said “The last lighter I touched was the one I used to set myself alight.” Not only had I touched another lighter, but I had words to explain the hugeness of what I’d done. She embraced me in the biggest hug.

I skipped all the way to my bedroom. 5 minutes after having held a lighter in my hand.

Now I’m not expecting that tomorrow I’m going to be grabbing lighters left right and centre. Nor am I going to be enjoying candle-lit baths, bonfire night, cooking myself something on the hob or shutting myself in a room by myself. But that night I proved to myself that I can do those things.

I have been stuck for 8 years. Trapped by my own fire. This weekend unstuck me. It oiled my gears just enough so that they could inch forward and I could see that there is a stage ahead. Something I didn’t know was there. But at this weekend there were people who had gone through that stage and moved forwards. There were people still on that journey. But most importantly it proved to me that it is possible. Even the most stuck people can move forward. Time heals too.

I’m so grateful to have had this opportunity. To feel empowered. To have hope. To feel like maybe I do have more control over my life than I thought. I will move forwards, and it will take time, and I will still need some help. But I will move forwards.

The next chapter is just beginning.

A Year Later…

Around year ago, I wrote a couple of semi-dramatic blogs about when living with an Eating Disorder reaches a life-threatening point.

But for many people with eating disorders, and for a large amount of our time living with them, we are not at this point – and indeed although Anorexia remains the psychiatric illness with the highest death rate, many people with Eating Disorders live for years without any emergencies – but its highly likely that their quality of life is significantly affected.

This is the part I want to talk about today. The times where people think because you look OK that you are OK. The times where people don’t even realise that you have an Eating Disorder. The times where you’re still able to work, or appear to live a normal life. The times where your Eating Disorder is a secret – no-one else’s business but your own. The times where medical professionals are impressed with your “healthy diet” or exercise habits – because they don’t know any better…

A year on from an admittedly very difficult time, on the outside my life looks OK, I don’t look visibly unwell, people who spend a bit of time around me will see me eating and drinking and joining in, I’m working, partaking in hobbies, travelling again, my life isn’t full of medical appointments and eating disorder appointments.

So I got better again then?

Not quite.

So many people, when they knew I was seriously unwell last year said things such as “get well soon”. As someone who has had an Eating Disorder for over 20 years this felt like a kick in the guts. I knew that “getting well soon” wasn’t a likely scenario and that getting well at all may well be impossible. I think people probably meant that they wanted me to look weller, and appear to be enjoying life. Which is nice. Whereas I don’t want to discourage people for aiming for full recovery – and I do think this is possible for some people, however long they have been ill – I know for me this is not a likelihood in the near future or maybe ever.

Last year – after 2 lengthy stays in general hospital, I finally (6 months after being assessed and accepted) was able to access the Eating Disorder Day Service about 6 weeks after the 2nd admission. It didn’t go very well. A combination of being way past the point where I actually wanted to get better, a decline in physical health, a bad decision deciding to go to Barcelona with my friends to a Skate Festival (which cumulated in me refusing to eat or drink in the 30 degree heat and skating at least 7-8 hours a day and therefore an emergency return to the UK and A&E here), my on-going mental health difficulties and my difficult time of year PTSD-wise approaching meant that it was probably doomed to fail from the start. I made it about 5 weeks before being given an ultimatum – start to gain weight or you’re out – which I wasn’t able to achieve (plus I had a psychotic episode around that time which wasn’t ideal). I left treatment with not many options. Still quite mentally unwell, my life had shrunk considerably – I didn’t do anything, I had no physical energy to take part in things, I had no interest in anything. I had no reasons to recover – or the ones I had were far too intangible for me at that time. My physical health spiralled and the eating disorders team withdrew active treatment with me and decided to monitor the physical decline and admit me to hospital if it got to that point (a kick in the teeth if ever there was any – “you’re too ill for our service”). Luckily I have a care co-ordinator who knows me very well and somehow managed to spark something that let me start to think about changing my behaviours and begin to eat a little more and engage in less compensatory behaviours. The eating disorder team started engaging with me again and I followed meal plans and gained the necessary weight with the hope of having some therapy to address some of the underlying issues and body image at some point. I was even put on the waiting list for this.

However, not long after I’d maintained a “healthy weight” for a couple of weeks my time with the service was over, the hope of therapy to address the underlying issues was withdrawn and that was that.

I started to subtly cut things out of my diet and increase my exercise pretty much immediately.

I wasn’t recovered. I am not recovered. My life is plagued every day by obsessive food thoughts, food rules, restriction, over-exercise, body image woes – it rules everything I do. But from the outside there is zero drama. I’m living in a body that I’m not psychologically used to; And everyone celebrates my new found “recovery”… which doesn’t exist. How can one recover from 20 years of an eating disorder by gaining X kilos in a few months? It doesn’t happen and it hasn’t happened.

Although I’ve had many periods of comparative wellness in my life, I’m still plagued by the psychological issues that come with an Eating Disorder – poor body image, crippling anxiety, perfectionism, tendency to over-do everything – I’ve never known a life without these, even as a young child. I might look physically better on the outside – and I might be going through the motions and eating well (and probably even enjoying or being enthusiastic about food), but psychologically I never recover. My thoughts remain the same whatever my physical state.

My first thoughts related to food/greed/myself as a bad person I can time stamp at just before 3 years old, when an older relative had taken a fall in McDonald’s – where we had gone so that I could have a Happy Meal. I remember, at that young age, relating the accident to my greed in wanting a Happy Meal. In my young mind, if I hadn’t have been greedy, they wouldn’t have fallen. Incidentally, similar incidents with elderly relatives falling over toys I’d left out did not evoke the same feelings of guilt. I learnt at a young age that food and greed was something to feel guilty about.

In junior school I remember sitting in school orchestra, looking at my thighs splayed out on my chair (as thighs do when one sits on a chair) and wondering why my thighs did that and I couldn’t see that any one else’s did. I remember doing the amazing PE kit changing routine that assured not an inch of my perceived fat stomach could be seen when changing from my normal clothes. I wore tom boy clothes to cover up my fatness. I sat crossed legged on the floor in school assembly, hunched forward with my elbows covering the fat that splayed out by my knees when I crossed my legs. In Y8 and Y9 I wore a jumper tied around my waist all day every day to cover my stomach and bum.

So it may not come as a surprise when I say that even though I might be “out of the danger zone” and joining in with life again, that I’m far from recovered. I’m keeping myself out of the physical danger zone, just. But life isn’t exactly enjoyable.

My worst nightmare is when someone says “great to see you looking so healthy” or “you’re looking well again”. Just don’t comment on my appearance. Unless you know me very well and the reality of what my day to day is, just don’t comment on it. I don’t want to know how well you perceive me to be, because I can guarantee what you are seeing doesn’t in the slightest reflect what is actually happening inside my brain.

If you do feel the need to comment – things like “nice to see you out and about” again are much nicer. It acknowledges that although it might be taking some effort, I’m at least able to join in on life a bit more now.

For anyone with an eating disorder – psychological recovery is much, much longer than the physical recovery – sometimes by decades, and we probably aren’t getting any help with that either. It really helps when people acknowledge this by remembering that yes, we might be eating, but its probably still really hard!

Feel the fear…and do it anyway?

All my life I’ve been running… running away from what? My past? My trauma? I’m not even always so sure. For the last 20 years at least, I’ve been running blindly, never looking back.

In whatever way you could run from life I’ve done it. I’ve moved abroad multiple times. I’ve travelled. I’ve kept myself insanely busy (during my final year of uni I did a full-time degree with placements, supply taught, volunteered in a school, ran a rainbow, brownie, guide and senior section group, had a weekend job at a milkshake shop, was president of the uni netball team, played in a local netball team, lead a Girlguiding UK development project to Chile and organised the project and the team members throughout the year of preparation, I fundraised for said trip, I never spent a holiday or week off in the UK, I went out up to 4 nights a week…and that was potentially one of the calmer times in my life). I’ve had more suicide attempts than I can count, and probably at this point a thousand or more episodes of self harm. I’ve drank into oblivion. The one method of running away I haven’t really used is hard drugs – once was enough for me – it didn’t end well. I have physically ran away, and still do – whether consciously or not. I have disappeared. I have starved myself. I have got myself sectioned and locked up or sent away so I was still effectively running from life. I’ve filled my days with exercise – adrenaline-ridden sports. I dissociate – much more than most people appreciate – I don’t feel a lot of feelings because dissociation protects me. I’ve never, ever in my adult life stopped running.

But for the first time I’ve started to look over my shoulder at what I’m running away from.

And I feel fear.

And its fucking awful.

I’m 6/7 months into my first proper attempt at therapy. I’ve had some partial therapy situations before but either its been the wrong therapy, the wrong time, I’ve not really engaged or it was just too short and shallow. I’ve never really had the chance to look back.

For the first time in probably at least 8 years my life is fairly stable (in my terms anyway – I have a stable roof over my head, a job, my body is not about to pack in physically and no active trauma is happening to me). But yet every single day is still riddled with fear. My body courses with adrenaline that I can’t keep in check. Last week things really came to a head and I ended up getting really distressed because of this fear. I couldn’t function, caused a scene at work, and the skatepark and various other places. Things weren’t OK. I cope pretty well when things are shitty around me – Its my normal. I found myself yearning after 2020 when I had no safe place to stay, was exhausted, life was terrible and unsafe and i wouldn’t wish it on my worst enemy, but some how made it through – why couldn’t I be the person I was then? Why can’t I make it through my safe cushy day today – where I have a roof over my head, no immediate danger?

So I was struggling to function last week when I rang up the duty team to speak to someone. I was so scared something horrific was going to happen. I’ve lived my life with bad things happening to me – why would now be suddenly different? I told the person on the end of the phone (“oh I haven’t had chance to read your notes but I know your care co-ordinator is x”) – “I’m feeling fear, I’m feeling so scared. I’m terrified”

So you can imagine it went down really well when they suggested “have you tried mindful colouring?”

In my mind I’m literally doing the equivalent of running from a bear – and you suggest stopping and doing some colouring? – no wonder crisis care is in a mess.

Cause of distress = fear

Solution – colouring in

It doesn’t make sense? I rang on 2 separate days – had varied experiences but none of them made me feel much better – phone calls of over 30 minutes just served me feeling less understood and more anxious…and questioning where I had put my colouring pens…

After several days of feeling like everything bad that had ever happened in the world was probably about to happen to me (and my mood and ability of socialise and function reflecting this was not great). I rang the charity who provide me with therapy. I didn’t speak to my therapist – she only works 2 days a week, but spoke to her supervisor – the clinical director. I only spoke to her for about 12 minutes. But she didn’t suggest colouring in. She explained to me what was happening.

She was describing it to me as a smoke alarm going off – but its just someone burning the toast. My smoke alarm is in excellent working order – but its going off all the time – because in the past its had to. I have been in so many situations in my life where fear was the appropriate response (whether or not I actually felt that at the time is another issue) that my smoke alarm’s default setting is kind of set to “going off”. Imagine you hear a car alarm on the street – and you get filled with fear-based adrenaline. It must be your car that is being stolen! You check out of your window and your car is there, safe and sound and the alarm is coming from further down the street. In theory you can rest, safe in the knowledge its not your car that is sounding the alarm. But you don’t rest. The constant siren puts you on edge, you can’t concentrate, you can’t watch TV, you can’t get anything done. In the end you get up and leave the house – do something to keep you occupied and away from the noise.

That is what my life is like, living with Complex PTSD every single day. My smoke alarm. Or my car alarm, is going off all the time.

But this was so much more useful information than “why not try some colouring”. No it didn’t solve the problem or provide me with a solution to make it go away. But it explained to me why I was feeling the way I did. And more to the point – instead of suggesting distracting and not having the feelings at all like I’ve always been told to do – the suggestion was feel it.

Now the idea of feeling fear, and sitting with it, invokes even more fear within me. This isn’t going to be an easy ride. And I’m angry that I have to do it because of things other people have done to invoke fear in me in the past.

My therapist yesterday explained that all of this fear feeling is a good thing. I’m not using dissociation to blank everything out. It means that doing therapy is useful for me. But it doesn’t mean its easy. She likened it to climbing a mountain – its never straight up and there are ups and downs and obstacles. At the moment I’ve kind of gone down into a bog – its in a bit of a dip and I can’t really see out of where I am now, and I’m making massive efforts to take steps forwards but I’m not moving anywhere. But I’m still taking those steps. I could stop and go back – but I’d still be on a mountain. Or I can carry on, eventually I’ll be out of a bog and have a bit of a better view of the path just travelled and the road ahead. But for now I’m just stuck trudging through the bog. With a bear chasing me.

Nice.

The Baton of Hope

TW: Suicide, suicide methods

On Wednesday I took part in one of the most deeply moving events I have ever attended.

The Baton of Hope – https://batonofhopeuk.org/ – is the UK’s biggest ever suicide awareness and prevention campaign. Founded by two fathers who recently lost their sons to suicide, the campaign hopes to start conversations, reduce stigma, improve the help available for people and reduce the taboo around talking about suicide – a barrier to so many asking for help.

As part of the campaign, the stunning Baton – made of precious metals by the gold and silversmiths to Queen Elizabeth II – is currently touring 12 major cities in the UK. Passed from baton bearer to baton bearer like the Olympic torch. And on Wednesday it was Sheffield’s turn. And I have never been prouder of my city.

The day started in Hillsborough – with a village of stalls from local organisations supporting mental health and well-being set up in the park. After starting at Sheffield Wednesday football ground, the torch was carried by a SWFC player who had experienced losing family members to suicide out of the stadium and towards the park. This was the first of several stops in the day which allowed the Baton to be displayed on a plinth, and key local partners to make presentations, share their visions for combatting suicide in the city and share stories. Throughout the day there was a stop for the emergency services, for community organisations, for education, for the NHS and more.

My leg holding the baton was fairly early in the day. I think at this point I’d not grasped the magnitude of the day. I’d struggled to find where I needed to pick up my baton bearer t-shirt and ended up being late so was somewhat stressed its fair to say. I had a brief time of being in the company of some of the lovely organisers. I was dropped at my starting point, a somewhat non-descript strip of dual carriageway – a route that I cycle every single day. I was sitting there, alone, not quite sure what was supposed to be happening. Those familiar feelings of isolation were swimming around – ones that I know all too well from times when I have been suicidal in the past.

But then the magic of the day started to glimmer. Another person in a baton bearer t-shirt was walking towards me (sans baton), and it turned out to be the person who was due to hand the baton to me – but she didn’t know where her start point was. I did, so I offered to walk back along the route to show Sonia – who worked for a post-suicide support organisation – the start point. As we were walking I spotted a small mob of dark blue t-shirts crossing the road. It was team SHSC (Sheffield Health and Social Care NHS FT) – come to support me on my leg of the tour! Some members of my department, someone from communications, a senior member of staff and a few others from the Trust and local partner organisations had come out, in matching SHSC Baton of Hope t-shirts to support me on my walk. The day started to feel much better, and we had good fun taking some photos whilst we were waiting for the Baton.

In a couple of minutes we saw a very energetic guy in a white Baton of Hope organising team t-shirt speed walking towards us to let us know the baton was approaching, and then I could see Sonia, followed by a group of people including organisers and a policeman. The baton was handed to me and I was astounded by its weight, the beauty of the object and its intricate and meaningful design. Some more photos followed and then we started walking. I can’t remember much of the walk, but I remember that I felt so surrounded by support and love and that felt amazing.

All too soon it was over as we approached the next corner and a member of the fire service was waiting to receive the baton from me. When I first saw the uniform I was anxious. I have Complex-PTSD and a lot of it is to do with fire, I am incredibly scared of anything relating to fire – including fire engines, sirens and alarms, and I think at this point my mind had to go into autopilot to manage the transition. It was only afterwards that I really reflected on the personal significance of handing the baton to a member of the fire service. In 2015, not really caring if I lived or died, I set fire to myself whilst an inpatient in an acute psychiatric ward. Fire has always held a significance in my life for various reasons but now, after that incident, has become something so terrifying that it affects every single thing I do every moment of every day. In 2021, hopeless and lost, having spent almost 18 months “locked out” instead of locked down, on top of managing complex mental health problems, I had attempted suicide – using a number of methods combined. I was pulled from a noose in a tree, unconscious, by the fire service and resuscitated on the grass nearby. At the time, I wasn’t able to be grateful, it took me months to move on from that suicide attempt, and the reality of the disappointment of waking up, in an even worse position than I was in before (detained under the mental health act) was too hard to bear. Nothing had changed in my life, I was still living in an impossible, unsafe and exhausting situation whilst trying to keep up appearances with going to work, being prominent in the skate community etc. 3 months later my nephew was born. And although I have reached very low points, something has changed for me, and suicide is no longer an option. I’m finally able to say – despite the complexities and difficulties in my life – that I am grateful to the emergency services for saving me that day.

Back to the tour! We regrouped at the HQ of SHSC and more people joined us to support another colleague, Jo on her leg of the tour. Jo was taking part as she had lost her son to suicide. We walked with her, members of her family, and others for a couple more legs. The policeman was still going strong – in full uniform!

Back again to HQ, for a brief interlude painting hearts for the NHS’s 75th birthday before hurrying on to Sheffield Flourish, one of our partner organisations – who were due to receive the baton for one of its half hour stops. At this stop, the voluntary and 3rd sector organisations would have an opportunity to share the work they do in the prevention of suicide. There was a glorious spread as it was lunchtime. It was great to see members of the Flourish team who I haven’t seen in a while – more connections. That brief isolated feeling from the morning had totally dissipated by this point! The baton arrived and I received it outside of Flourish, to bring it up the stairs to hand to the service user who was receiving it on behalf of Flourish. It was then placed on its plinth for a well earned rest. Over lunch, people gathered to listen to a variety of short presentations. I went first – speaking briefly about why I was taking part as a baton bearer, followed by people from various grassroots and local organisations talking about their work, as well as colleagues from SHSC’s engagement and experience team. It was fantastic to have so many organisations and individuals in the room talking about this “taboo” subject of suicide and pledging to make a difference.

Back to HQ again, this time I took some much-needed time out to myself to reflect a little before cycling over to Weston Park to join my colleagues again for the NHS “stop” of the tour later in the afternoon. I was delayed slightly as I came across a woman who was obviously in some form of mental health crisis – people were walking past, ignoring what was happening. I decided on today of all days, even though I was in a hurry I couldn’t walk past. I came alongside the woman and cycled with her as she marched in a worryingly straight line. She explained she had mental health problems and I replied that I did too, and I know how it feels to feel like this. We talked a little, she was adamant she didn’t want any help but couldn’t give me any assurances of her safety. Knowing I was unable to help her any further personally, I phoned the police to ask them to do a safe and well check on her. I really hope this was the right thing to do.

Back at Weston Park, this was the stop where the reality of why we were here today really started to sink in. After several talks from various key NHS organisations, a woman called Leah, who worked at the Children’s Hospital Trust, spoke for the first time in public about her own personal experiences with suicide. And this (along with the accompanying rain) was where it really started to hit me, I felt a little choked up. But yet more connections were made, I thanked Leah for speaking publicly and congratulated her on her first time doing it – I know how hard that is! And had a funny little moment where another member of staff from the Children’s was fan girling over me from Twitter! The baton left again (still with policeman in tow and energetic guy looking as lively as ever) and a woman with pink hair carrying it.

I cycled into town, passing the baton party as I went – I rang my bell and they cheered and someone shouted “woo Ellie!”. Wherever I had been in the city that day there were people in Baton of Hope t-shirts, or ones you recognised from the day – and we would have brief moments of a wave or a smile, or a “how are you doing?”. The spirit of connections really was shining through the day.

In town, outside the town hall the baton stopped once more. By this point it was raining cats and dogs but spirits were higher than ever. People were coming up to speak to me who had recognised me throughout the day, or heard me speak at Flourish. For a while I was stood by myself feeling a little choked up, and the woman with pink hair, Jo – who had carried the baton from Weston Park came over to me “Are you ok?” – in those three words and that action the spirit of the day was summed up. Everyone checking in on each other, not wanting to see someone alone or struggling. We were all in this together.

The baton moved to the winter gardens. Where two gigantic tapestries were displayed, each square was a personal tribute to a different person lost to suicide. It was very moving to see. Once again there were various organisations and stalls, and people from throughout the day were gathering before the finale in Tudor Square. I connected again with Sonia from earlier in the day, spoke to someone from the newspaper and then reconnected with Steve, the South Yorkshire Police officer who had walked every step of the way with the baton – despite his shift having finished in the middle of the day. The police have a very bad rep regarding mental health, and this is not helped by things like SIM and the Metropolitan Police withdrawing from attending mental health calls. To have one officer, walk the whole way, was a huge message of solidarity from the police. Talking to Steve about my own experiences, and seeing how proud his colleagues and his Sargent were of him, it was clear how much SYP want to help, they want to support. They may not always get it exactly right but their intentions are good, to support the people of South Yorkshire in their times of need.

The baton was carried on its final leg of the Sheffield tour – from the Winter Gardens to a stage outside the Crucible Theatre in Tudor Square by Louise Haigh, MP. Tudor square was teeming with people, despite the somewhat miserable rain that had set in – the spirit of the day had not been dampened! The baton was received on stage and very moving speeches given by Mike McCarthy – one of the founders, and football players from Sheffield Wednesday and Sheffield United, as well as live music.

Once again this was an opportunity to reconnect with people from throughout the day – it was really nice to be thanked for taking part by people organising the event, and to be told I was inspiring and to keep doing what I’m doing.

I am so glad I took part in the Baton of Hope tour. Suicide is something that has affected my life for the past 2 decades – either my own suicidality and numerous attempts at taking my own life, or those of others around me. Aged 35 I don’t have enough fingers left to count the number of friends I’ve lost to suicide, and most of these were in contact with services and several were in mental health units at the time of their death. But its something that I still don’t speak about much – despite having a job that involves me often speaking about my experiences living with mental illness. Suicide, alongside self-harm remain hugely taboo subjects, even in a world that is becoming more accepting of mental health problems such as anxiety and depression – there is still an additional stigma when it comes to anything more sinister. Many of my friends and family have been adversely affected by my own suicide attempts – there have been numerous times where people have thought that I was dead…how on earth do you broach that conversation in the aftermath? The shockwaves of suicide and suicide attempts are far reaching. Help for those affected by suicide or suicide attempts of their loved ones is rare – but this day highlighted that there are organisations out there working to change this. Help in the aftermath of your own suicide attempt is also sparse, services need to be better at understanding the trauma of surviving a suicide attempt and providing appropriate support when it is needed. When people feel suicidal and ask for help – they are so often met by “control your emotions”, “I don’t see what you’ve got to worry about”, “you’re just wanting attention” – this needs to stop.

Seeing the determination of two fathers resulting in the creation of the biggest suicide awareness and prevention campaign the world has ever seen is incredibly inspiring, and reminds me if you put your mind to it, anything is possible. I hope for a tomorrow where people won’t die in silence and isolation. Where conversations about suicidal feelings are not taboo. Where when someone asks for help, it is available in a timely and appropriate manner – not just an 18 month waiting list. Where being in mental health services doesn’t make people feel more hopeless and suicidal.

I look forward to this event being bigger and better next year – and to some real tangible change to suicide prevention in the UK.