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.

Needs Must – why paying attention to the hierarchy of needs is important in helping mental health service users to achieve their full potential

Most people are at least vaguely familiar with this diagram – Maslow’s Hierarchy of Needs. The theory being that we need the lower layers to be stable and consistent to build on the ones above.

My basic needs being met is something I’ve battled with consistently for at least the last half decade – in reality I’ve probably struggled to have my needs met for most of my life but because I had my basic needs covered – the rest of the pyramid appeared to be relatively stable, from the outside at least.

For the past couple of years I’ve struggled getting the lower 4 sections of my needs met. I can function to some extent if my basic needs are met – even if some of the higher ones, particularly psychological needs, are not met. However when those basic needs that everyone take for granted start to slide, things unravel pretty fast.

I’m at another point in my life where yet again my base layer of needs – Physiological needs – are not being met. And not surprisingly everything has fallen down around me. I’ve worked hard over the years to build the upper layers for myself – building friendships, working, doing things that bring me joy and boost my esteem – but the foundation layers have always been wobbly, so it doesn’t take much to bring them tumbling down.

Because I’m eloquent, generally fairly well dressed, have a job (even if I’m not working at the moment) and seem to have insight into my mental health problems, I often find that when people are taking my psychiatric history they skip out the more social aspects such as housing, safety and financial situation – all of which are major problems for me – but are presumed to be sorted because of the aforementioned eloquence. It’s the same equivalent as getting a really depressed person in and not asking them about elevated mood because they look so low right now. It’s really important to cover every area because you don’t know what might be lurking in people’s corners.

Currently, as a direct result of my mental health problems, I am not able to meet my basic physiological needs consistently – food (I can’t always afford it and I can’t heat things up myself so left without help I can only have cold food), shelter (I cannot access my house – even step beyond the threshold without support – renting a house is not the same as being able to access a house – and because my situation is so dire currently I don’t have any access to my house during the day times and don’t have access to my house 7 nights a week), warmth (comes along with the previous two – I’m stuck outside left to my own devices), rest (impossible when you don’t have somewhere to shelter and put your head down or even just chill out), water (I don’t have access to a toilet without walking at least 15 minutes (if places are open) or somewhere to wash except my cold outdoor tap).

Because my basic needs are not met, the next layer of needs – safety needs are difficult to meet. If I am unable to access my house, especially at night I am putting myself and my belongings at risk by sleeping rough, in my garden, being out and about at inappropriate times of night or being out and about in the day when its wet, or I am simply tired and don’t want to be out but have to be anyway. Add that to the fact that I’m in a significant mental health crisis right now – my security and safety are once again very compromised. Because of my PTSD I would not be able to protect myself from an intruder or attack as I go mute and freeze and/or dissociate very easily.

The next layer of needs are a complex one – the psychological needs. Some of these I am actually really good at doing myself (if the needs underneath are met adequately to support this). Belongingness and love needs – I make and sustain friendships very easily – however, at times when my other needs are not met – my friends are often relied upon by services to be my mental health carers and this is very damaging. However, because of untreated trauma, I have never (at the ripe age of 34) been in a romantic relationship. And I don’t think I ever will be able to unless I’m given the opportunity to address my trauma.

The next level, esteem needs is another complicated one. I have worked hard over the years to do things that increase my self-esteem as its naturally very low and because of being in repeated traumatic situations like this one it gets knocked down very easily. Prestige and a feeling of accomplishment is a very personal thing – sometimes I feel proud because I’ve slept rough and actually been independent for the night instead of having to rely on someone else – even if the experience was horrible. Other people might get a lot of feelings pf prestige over work promotions or buying a really fancy car, having children or owning a home. I get a lot of feelings of accomplishment through my skating and also through my work. But at the moment both of these thing are difficult to do because, quite frankly its impossible to turn up to the office and not be a total wreck when you’ve got the anxiety of a night with no shelter ahead of you. So once again this higher tier can’t be achieved unless the base layers underneath are adequate.

The top tier – self-actualisation, is something I definitely have not managed to achieve by any means in the lat decade. Achieving one’s full potential. I’m not denying that I haven’t made progress in some areas – less self-harm, more work and positive activities. But I’m hugely held back on this one because once again, nothing in the upper tiers is achievable if you don’t have the lower tiers nice and stable. I will never be able to move forward professionally – because I’m unreliable at work, because my basic and psychological needs aren’t met. I do have the potential, I know I do – I’m hard-working, fairly intelligent and good at making connections – but I will never be able to achieve my potential without the bottom 4 layers being dealt with.

I get a lot of people saying to me “oh but you have a job, you have so many friends, you have super fun hobbies – everything must be fine!” – but these mean very little, and in themselves are not achievable or sustainable if you don’t have a roof over your head and warm food in your belly. Everyone sympathises with the whole “moving house or separating is one of the most stressful things a human can do” thing – because in that process all our basic and psychological needs are jeopardised – even if that’s just for one day. Imagine if every day was as stressful as moving day, or the day you finally got a divorce. Thats what it is like for many of us with complex mental health problems who struggle to meet our basic needs every day. Whether that’s someone with memory issues who forgets to feed themselves or leaves the back door open by mistake. The person with depression who pushes away all their friends and family. The person with bi-polar who burns out because they haven’t slept for days on end. We’re all struggling to get those basic things seen to – so don’t be surprised when we can’t hold down a job, struggle to make friends or join a knitting group.

Work from the bottom upwards, slowly and steadily and you can help someone build a solid foundation upon which they can really achieve their full potential.

A Different Kind Of Crisis Care

April is a bit of a blur for me. I have not been well at all (and had been ignoring warning signs beforehand) but it finally got to the point where even I had to admit I was unwell. It was a bit of a perfect storm in terms of precipitating factors (which I don’t want to go into here but came from several areas of life and were largely out of my control), to be honest some of those things on their own would be enough to knock any bird off it’s perch – but a lot came at once and because I had been ignoring other warning signs beforehand (which was under my control but I’m having a hard time learning to cut myself slack and not try and paint a mask on) and it all kind of came to a head.

I carried on attempting to persevere – turning up to work, pretending things were OK etc. But by that point my body and my mind had already gone through the mill a bit and it wasn’t until I got to the point I was unable to remember being in various meetings at work, unable to travel from A to B independently, and even not be able to do the washing up, tolerate having my beloved ratty boys around me or remember to eat or drink, That I finally started listening to those around me and admitted I might need to take it easy for a while and look after my mental wellbeing. I am someone who lives with severe mental health problems every day but goes to great lengths to live a life of someone who doesn’t…and inevitably I can’t keep it up forever.

It’s been a long, hard slog – and one that felt like it was only going from bad to worse for a good few weeks. But I’m finally starting to piece myself back together – but tentatively. This has been a period of significant crisis – of which I probably haven’t had now for about 6 months since my life became a lot more stable and manageable. However, for the first time, we navigated through this crisis using the resources that were already available to me – but just more flexibly. I did not need intervention from the crisis team or home treatment, nor did I need to spend the night in the decisions unit, crisis house or a ward – and this is new to me but so much better. Yes, I did need medical attention on several occasions and the emergency services were also involved several times but these were all well dealt with and swiftly able to be handed over back to my normal care.

As well as being mentally unwell I have also struggled with the after effects of several head injuries which has resulted in an elongated period of concussion making me physically less able, struggling with memory, processing and managing tasks etc. This has been something I’ve found particularly difficult as I couldn’t do the things that help myself. Hats off to those that live and manage life with a more serious long-term brain injury. It really is hard.

So what helped manage this crisis period? I have several things at my disposal now that I have not always had in the past – or have had these things limited and therefore my ability to utilise them wasn’t great.

A safe place: This is the first time in a number of years that I’ve gone into a crisis and had a safe place in which to attempt to heal myself. A stable, accessible and safe home has not been a given for me until very recently. In the past year I’ve had the physical safe place but not always the means to access it. This time, I was able to use my support hours flexibly so my awesome team of Personal Assistants (PAs) could help me stay at home as much as I needed. This is so basic and something a lot of other people don’t even think about but for me has been something I’ve never had. It’s the absolute baseline of maslow’s hierarchy of needs and without this there is little point trying anything else. It makes me cringe when I’ve been in crisis previously and been sent back out into the cold with no safe place to be – told to “use my coping skills” and maybe offered a follow up phone call – how could anyone ever think I could successfully pull through a crisis without that? I spent years beating myself up because I couldn’t – but now I’m starting to realise that wasn’t OK and no one should have expected I could make it safely through crisis without a safe home.

Personal Assistants: OK so I know this definitely is something I am fortunate to have – but I only have them because basics like accessing home, cooking warm food and feeling safe are not possible for me without assistance. My PAs have been in place in some format for over a year now but this is the first time they’ve been allowed to help me as they see fit – previously they were under very tight restrictions as to how many hours they could work and were not guided by the mental health team or each other. Now they are well supported with external supervision, by each other and by my care co-ordinator if necessary – they are able to appropriately help me have access to the tools and resources so I can get myself back on track. In this time of difficulty they took more charge than they usually would on my daily life – making decisions about whether or not I had day shifts, cooking for me and making sure the ratty boys were looked after – all things that functioning Ellie can usually manage. This allowed me to free up spoons to help me just get through the day safely.

Mental Health team supporting flexibly: Particularly in the last year I have been actively told to not reach out for help from services (and indeed I stopped doing that even if it put my life at risk) and even been bullied and blamed for not managing in adverse situations. However, 6 months ago things changed and I got a new care co-ordinator and additional support from a senior member of staff. This also coincided with input from an OT from a charitable organisation to help with my eating disorder. With these people in place I have rarely had to ask for help – because it’s there if I need it. They all responded in a compassionate, non-judgemental and non-punitive way. I wasn’t made to feel like I was a crap human being, or guilty for how I was struggling. They discussed risk and self harm openly with me – wanted to find out more about how this was for me, and most importantly did not make me feel like I’d failed when risk did occur. I had phonecalls or appointments a couple of times a week that I didn’t have to beg for or explain myself to someone who had never met me before. Just a gentle catch up and helping me break my day down into small, manageable chunks. I was assured they were there, and to please ask for help if I need it. The OT even was able to come round and help me process my PA’s timesheets which were due and very complicated to do and something I just couldn’t fathom managing (which further freaked me out because I was worried my PAs wouldn’t get paid for their hard work). With this gentle, flexible, empowering support I did not need the input of any additional crisis services, and it has tailed off gently as I now don’t need it as much – this is different from the very sudden ending when working with Home Treatment for example.

Supportive workplace: I am incredibly fortunate that my management are more on the ball about my mental state than I am – encouraging me to take things easy and supporting time off before I would let myself do those things! They have been unconditionally supportive, kept in touch and allowed me to take control of phasing back into work in the best way for me. In addition, I did something I have never previously done and put an out of office reply on – specifically stating that I was taking time out to look after my mental health. I was incredibly anxious about doing this but the response has been people knowing that I’m not working at 100% ability, and other colleagues being incredibly supportive and welcoming on my return. Knowing that my livelihood will be there for me when I’m better helps me pull through much faster I feel.

Friends and family: I struggle in asking for help from anyone full stop, not just services. So reaching out to my social networks is difficult. However I have some amazing people in my life who are sometimes quite proactive and forwards with their support. Which I’m very grateful for as I’m often unable to ask or articulate that I need help. On more than one occasion I’ve had friends turn up because they suspected I needed help and was unable to call for it. I’m so fortunate to have these people in my life – and the others that just send gentle end encouraging messages or little gifts through my letter box. It all helps and it all means so much.

Going back to basics: Especially because I had a head injury as well as my “normal” non functioning, I really needed to strip life and the tasks I had to complete right back down to basics. This involved things like batch cooking so I could have the same lunch every day – taking off the decisions and food preparation so that I could concentrate on eating it. It meant literally only thinking about hour or even minutes ahead. It meant saying to people “I’m sorry I can’t do this for you right now, I just need to take time to concentrate on my mental health”…something I find incredibly hard to do but was important that I did.

Doing what I feel my body and mind needs without judging: I often don’t do the things that I know inside I need to do – because I place a lot of judgement on myself or worry about judgement from others. But I’ve really tried to listen to my body, my mind – their most basic internal needs and go with them. Yes that means I haven’t left the house without at least 3 cuddly toys in my bag and wearing noise-cancelling headphones in about 4 weeks. But it’s what I need to make the world less overwhelming and allow the smaller parts of me to feel comforted and safe. I even turned round and apologised to my colleagues last week because I’d just had several back to back meetings and I needed to curl up under my desk with my cuddly toys and grounding playlist. They didn’t bat an eyelid because they knew that by doing that I was assuring I could make it through the work day.

I’m still a long way from “optimum Ellie”, this has been a significantly difficult period and the precipitating factors are not resolved nor have they gone away. But I’m getting there and slowly learning to make the right choices – even if I’m embarrassed about them or worried about judgement.

I had a beautiful interaction with a consultant in A&E last week who had known me when I was a “revolving door” case several years ago. She reminded me how broken and hopeless I was back then, and although she could see I was going through a difficult period, she was amazed at the way I was managing things compared to back then. It felt good to tell her I was working and rarely came to A&E anymore. She told me that she was now the mental health lead for medics in the department and that it was people like me that had inspired her to keep combatting the stigma surrounding people like me in the department. That felt good.

I’ll get there. But bear with me for a little while whilst I work on myself for a while.

Sharing the story

So the title of this post is probably a bit misleading – I’m not going to be sharing the whole of my story – for starters you would need 31 years and 51 weeks to understand it fully and I also don’t want to be that person who walks into a party and starts up a conversation going into mega detail about the pain in their leg they’ve been having for a couple of weeks. I’ve had a pain in my head for pretty much a whole lifetime but it’s not the only aspect of me – so this blog will talk about other life experiences as well as those related to my mental health. I am lucky to have had a very varied and wide range of experiences in my life – some hilarious, some traumatic, some close to home, some thousands of miles away- and they all shape who I am today. But I’m more going to be talking about the process behind sharing my story.

I’ve often been told “you should write a book” “you should write a blog” and everything in between. To put it quite bluntly I’m too busy doing life to sit down and write a book but if someone comes up with a technology where you can just scan your memories into a computer and it’ll write a book for you I’d happily comply. But a blog seems a reasonable compromise. And I’m not sure what it’s purpose is but the more I am learning to share my experiences (and it is literally my job now to do so) the more I’m realising that my story is potentially an important one to tell. I come across a lot of people who “don’t expect those sorts of things to happen to someone like you” or who say “I would never have known you go through all that – you look so normal” (if anyone would like to draw me a picture of what “normal” looks like please feel free to send me mail!) I think what they mean is that I don’t shuffle around muttering to myself, I am capable of eloquent conversation (most of the time), I have done a lot of things in my life, I am willing to engage with treatment (that has not always been the case), I do have have job, I do have hobbies and interests and I’m not locked up in a padded cell – on a good day – apart from some visible scarring, I can show no outward signs of mental illness. Yet every minute of every day I’m battling barriers that would make most people curl up in a ball and never leave their beds. “But it’s ok for you – you’re determined and motivated and strong”or “I couldn’t do what you do – I don’t know how you do it” … kind words and I understand the sentiment – but I think sometimes people think I have some superhuman powers of coping that other people don’t have. That, to be totally blunt, totally belittles the effort I have to put in to keep myself going every day. I’m not special at all and I wake up every single morning, slightly dissociated and confused and when I ground myself I want to die. Because that’s how I’ve always known waking up to feel like…wanting to die. Exhaustion at the idea that I’ve got to battle through yet another day. But the difference now compared to a few years ago is that (usually – and this does wibble slightly) within a couple of minutes I remember the novelty that I do have a life, I do have plans, I do have a job to go for, I do have friends and happiness does exist. So I haul myself out of bed and face that day because positive memories can’t be made lying in bed.

It is possible to live with severe mental illness and lead a fulfilling life – yes it might be rather more complicated, frustrating, less in your control and certainly more effort than your average person “doing life stuff”. But it is possible. I have the odd situation of being a service user (and one of those irritating ones that gets labelled as “complex case” (I’ll talk about my feelings about that in another blog) and is quite stuck in the system) and an employee in the same mental health trust. I am also someone who needs to be in a pretty significant level of 24/7 support but I can also hold down a job. My disability doesn’t define my ability and my ability doesn’t define my disability. People get very narrow minded that because I can work and travel across the world and put my pants on the right way round (though FYI last Wednesday this wasn’t the case) that therefore I must be able to cope with everything else and I spent years trying to get services to understand this. I’m all for a positive spin on things but solely concentrating on the fact that I’ve got a really good set of hobbies and friends and totally ignoring the fact that I’m incapable of entering and moving around a building independently or making a hot meal for myself or sometimes getting myself to the corner shop – isn’t going to help me move forwards in life. It has taken me a long time to accept that “both can be true” (a good old’ DBT dialectic) but I still think a lot of professionals have a long way to come to truly understand that this can be the case for a lot of people.

Hence why it’s important to talk. It took me YEARS to learn to talk. Diagnosed in 2005 with an eating disorder I took years to actually admit to anyone there was a problem (despite not doing well at my A- levels, having to take two gap years and being chucked out of uni and a job because of my illness) – I was an expert in denial and “yeah but” was my favourite response to challenges. I think in 2012 I started to realise maybe something was wrong (by this point I was in day treatment for eating disorders but couldn’t shake off the feeling of being a fraud so wouldn’t really open up to anyone) and then after a pretty disastrous 2013 I finally accepted something wasn’t right and would start to open up in private sessions with professionals. At some point at the tail end of 2014 I made a decision to start to stop hiding my mental illness (by this point I had been in day treatment for eating disorders 3 times, was in an acute psychiatric ward and had been hospitalised several times for overdoses). Prior to this I had always covered my tracks with most people except those that really needed to know. I started to let people know and far from being rejected by all and sundry I found that the response was surprisingly positive. I continued to struggle with actually opening up about what was going on for me but I did speak out arbitrarily about mental illness and didn’t hide that I suffered but it wasn’t until I was admitted to a year long specialist admission in York that I actually learnt to talk about what was happening. And that was a huge turning point. It didn’t miraculously make me recover or improve services but it did help me start to unpick and understand what on earth was going on in that grey matter of mine – and although I am still in a very complex point in my life – this ability to speak and articulate more about what is going on is going to eventually get me closer to where I need to be.

I’m also fortunate enough to have a job role where I don’t have to hide my mental illness…in fact so far from the truth because having experience of mental illness is in the job description for my role. And that’s a complicated dynamic – and one that takes practice and I’m still learning to perfect. But how honoured am I to have the opportunity to be in a position where sharing my experiences can genuinely influence others – people recovering themselves, professionals and how they practice, and maybe…just maybe…even have some influence on how services are run. Speaking out is the most important and scary step I’ve ever taken, but it’s worth it – for myself and for other people.