A Letter Of Apology And Thanks To My Body

Dear body

I’m sorry I’ve given you such a hard time over the years. I’m sorry I’ve hurt and abused you. Starved you and neglected you. I’m sorry that I’ve hated you for keeping me alive. I’m sorry that I’ve hated you for how you looked. I’m sorry for all the times you’ve had to be stitched back together and try to heal without the nutrition and rest you needed. I’m sorry for the times we ended up in resus because I’d hurt you too badly.

To my hair – I’m sorry I spent years hating you for being ginger (it’s hard growing up as a ginger kid in the 90s), I’m sorry I spent years ironing you straight and hating your waves. I’m sorry I didn’t give you the nutrients you needed so there is so much less of you because you’ve fallen out so much over the years. Thank you for still being there – I’m lucky and I’m only now appreciating you.

To my face. I’m sorry for scarring you, for cutting you and hiding you. It’s not about you, it’s about other people but I’m sorry that you bear the brunt of that. Thank you for working so hard to heal every single time. To my eyes – I’m so grateful that you’ve given me the gift of vision which isn’t a given for my close family. I’m sorry I’ve damaged you by overdosing on medication that you don’t like. You’re doing really well despite that.

To my teeth and my mouth. You’ve done particularly well considering how badly I’ve treated you. I hated you because I had to wear a brace but now I get compliments for my straight teeth. Years of bingeing and purging has caused some damage but you have held up remarkably well and I’m grateful for that.

To my head. We’ve had our fair share of problems between us. I’m sorry for all the times I’ve beaten you up and banged you so hard until you were lumpy, bruised and concussed. You give me a hard time but you also keep me alive and don’t deserve that.

To my torso. We’ve had the roughest ride. And you work so hard to heal every time. I’ve hated how you look for as long as I remember and I still struggle with you now. I’ve spent so long trying to starve you away. I’ve starved you of food and water and overloaded you with alcohol and overdoses. Yet still you bounce back, it takes you longer nowadays to recover but you still manage all your jobs and never put up a fuss about it. To my liver – I’m sorry for the years I spent making you work overtime getting rid of the toxic alcohol and paracetamol and other overdoses I sent your way multiple times a week. I’m sorry about refusing to let the doctors help you and sending you into early liver failure. You’re still here and you’re still doing your job and I’m more careful about what I put you through now.

I’m sorry for setting you on fire. For the 4 months in painful bandages and the year in constricted pressure garments. Again, you’ve healed so well. I hated having to look after you during this time because it meant I had to look at you but that’s not fair because you were working so hard to heal.

To my legs. You’ve probably bore the brunt of my difficult times. The times when there were so many deep wounds in you that you couldn’t mend any more. The times where I undid all your hard work and stopped you from healing, cutting you open again. I’m sorry for not trying to help you heal and leaving you to get infected and painful. I’m sorry to all my nerves and all the damage they have acquired. I hope that you’re benefitting now from all the exercise I do now to help you stay strong and safe. I think you are because you’ve rewarded me with reducing the issues I had from the damaged nerves so I’m really grateful you would do that for me after all I’ve put you through. Thank you for holding me up and helping me do the things I love like skating and cycling.

To my feet. I tend to forget you’re there – mainly because I can’t feel you. But thank you for staying strong and helping my legs carry me. I’m sorry I get pissed off when you don’t do as I tell you but that’s my fault for hurting you. I promise I’ll remember to check you’re ok regularly ‘cos you’re not great at telling me yourselves.

Throughout all I’ve thrown at you you are still keeping me going, and keeping me doing the things I love. Thank you and I’m sorry.

Lots of love, Ellie xxx

Connecting People

I felt it was about time to do a blog about something which has been a large part of my work life during the pandemic. I’m talking about the Connecting People project.

If you haven’t heard about the Connecting People model – then I suggest you visit https://connectingpeople.net to find out more about this model developed by research and social workers at the University of York – designed to improve social connections. Then head on over to https://connectingpeople.net/sheffield-blog/ to see a variety of stories about social connections and the Connecting People project in Sheffield Health and Social Care NHS FT and in the city beyond. You can also listen to several brilliant podcasts hosted by the amazing Jess Gibson with a variety of people on the topic of social connections.

The statistics are shocking regarding the amount of social connections someone with Serious Mental Illness (SMI) might have. Often it is as low as 12 people – and a large amount of that 12 will be healthcare professionals rather than “true” social connections. And the quality of those connections is often (not always) questionable when people are unwell. I know for me, when I was really in the depths of illness a couple of years ago – my only connections were with the mental health world – whether that was professionals or other people in hospital/treatment with me, and this wasn’t always positive and often held me back. For me, part of the recovery process has been opening up my social connections to non-mental health ones, people who enjoy the same hobbies as me for example. For many people things like connections with drugs can be a huge issue. On my first hospital admission I was in with a lady who was withdrawing from heroin – she had thrown her phone and all her contacts away prior to coming in to detox, the only number she kept was her partner’s who was also detoxing – as she knew she literally had to cut her ties with that world entirely in order to move on and not be dragged back in. The quality of social connections is so important – a few really positive, fulfilling connections is much better than many negative, shallow ones.

In the past year, more than ever before, the world has woken up to the real impact that social connections have on ourselves as human beings. We suddenly found ourselves in a world of enforced isolation, desperately scrabbling at ways to get our fix of other human beings. For me, I’ve been pleasantly surprised by the effect the past 15 or so moths have had on my social connections. I don’t live with friends or family so I had a very real fear of not seeing someone close to me for months on end. So the beginning of the pandemic was anxiety provoking for me as it was for most people in terms of the fear of social isolation. Over a year on, and actually I think I’m in someways grateful for the effect the pandemic has had on my social connections – particularly the quality of them. Because we were so limited for so long as to who we could socialise with, and how many people and where, it meant that definitely for me, I found myself pursuing those social connections that nourished me, that made me feel better, valued, and left me feeling energised rather than drained. That inward groan to go to that dinner gathering you didn’t really want to go to is largely a thing of the past. Many people I have spoke to have said how they feel like the quality of their social connections has increased in the past year – even though the overall number of social connections may have decreased. I’ve found myself spending a lot more time with like-minded individuals and not having to be forced to spend time with people that drain all my energy or bring me down. I’m fortunate I guess that a lot of my hobbies are sports that can be often done outdoors, and also because I work in the NHS I was in the fortunate position of being able to continue working (and hugely increase the amount of connections I made there because of virtual meeting platforms). Another (much slower, but has definitely happened) consequence for me has been hugely reducing my social media use. I don’t spend my time aimlessly scrolling through newsfeeds – I go out and meet people or message them individually. How wholesome!

Anyway, back to the Connecting People project. This had been something that had been introduced to SHSC prior to the pandemic, but I think it was the pandemic and virtual platforms to meet that really started to allow it to gain traction. We’ve had over 50 people – service users, staff, carers and more from the Trust and beyond join our meetings in the past year. We’ve had members of staff from the clinical and corporate sides of the Trust, staff from the lowest wage bands right up to the top of the scale. We’ve had service users join us which has become a gateway to them becoming more involved in the Trust and volunteering with us, we have had service users join us from secure hospital, the community teams, when they are well and when they are not well. We have had academics, people from the voluntary and third sector…we don’t have any limits as to who can be involved in this project – you just have to be personally enthusiastic about improving social connections for people connected with our services (and yes, that means staff too!)

Something that is very much right at the heart of the project, especially in SHSC, is co-production. And I do feel we’ve given it a pretty good bash. Co-production is harder to do that people realise, especially in a top-heavy, hierarchical organisation such as the NHS. However hard we might try, we can’t deny the fact that we do need buy-in from those nearer the top. Things like wider spread of the project’s benefits and financial barriers are really affected if we don’t have the support of those people in the organisation with clout and purse strings – unfortunate but true. But what we can do is make sure the voices of all the stakeholders in the project – whatever their position – are heard. And I think we do a pretty good job of that.

Our meeting on Thursday was a fine example of this. We had actually been very close to having to postpone the meeting for various reasons, but I am so glad we went ahead as it was one of the most passionate meetings I have ever attended. Some of our meetings run with a more formal agenda – updates on what’s going on, presentations, activities around next steps and goals etc. but this one was an informal meeting (something which made my colleague, Amy (who works in the business part of the Trust) rather anxious!) and we kind of just let the conversation flow. The meeting was attended virtually by an almost even distribution of staff and service users. And what unfolded was one of the most intense but most vitalising debates I’ve seen in a while. I honestly wish we could have recorded it – or had us all debating in public at a Quality Improvement event – it really was a fine example of staff and service users listening to each other, challenging each other, holding each other to account and speaking truly honestly and freely without feeling like their voice was less important than anyone else’s. Every single person in the meeting contributed so much valuable experience – we had problems managing how many hands were going up on MS Teams! The topic ended up coming round to care planning – a constant source of contention and something that is nigh on impossible to get “right”. But I kind of think the topic was irrelevant – what was important was the quality, equality and openness of the conversation.

However, one thing we did agree on is, this is all very well, but how do we turn this enthusiasm and idea-making into actual, sustainable change. That can make improvements for staff and service users. And this is where we keep coming up against blockages.

One: We don’t “sit” under a specific department in the Trust – this makes it really difficult to fully gain traction and sustainability. This means if people who are contributing to the project by their own goodwill don’t have the time, leave the Trust or simply lose interest – the project stalls.

Two: We are not yet embedded across the Trust, we have had a significant impact on those directly involved with the project but how do we make this go further? We are not asking for the level of commitment shown by those currently involved from everybody – but some level of buy-in and thinking “oh yeah – this is quite a good idea” would be helpful.

Three: Finances – we have no funding and rely on the goodwill of all those involved, which is great, but unfortunately in this 21st century world is not sustainable.

Four: I think now everyone recognises the importance of social connections, but unfortunately they are forever falling to the bottom of the priority list when risk, medications, CQC inspections etc. get in the way.

We still have a long way to go I think in making social connections more of everybody’s business in health and social care. But we are making tracks and I hope it continues. This project has proved that even with a large hiatus and loss of staff involved at its core, there is still the enthusiasm for it to continue. I’ve thoroughly enjoyed being involved with Connecting People – its hard work, and sometimes I don’t have the time or the headspace or the motivation – but its meetings like last week that keep me fired up. You don’t get that sort of atmosphere in many places in the NHS, I wish everyone could get a taste of it. I think also, the fact that I am primarily a service user (though also a paid member of staff – but a low down one) and I’ve been encourage to take the lead alongside others has been fantastic. It has given me a lot of confidence in life and in work – its definitely improved my connections in the workplace for sure! It feels pretty good to be able to say yes I’m a service user, but I’m heading up this project for the Trust. It feels great to be able to be trusted with that.

I’m obviously not in this on my own – far from it. I just want to name a couple of vital people to the fact that this project was able to gain traction and be sustained in the Trust. Liz, who took the reins for the first part until she left the Trust – an OT by background she was the perfect person to pull this forward (and she can’t seem to quite leave us anyway!). Richard – Associate Director, who has been a huge support and advocate for us from higher up in the Trust throughout – its brilliant to have your passion for this project onboard. Amy and Jess who both took the business side of things under their wing, we couldn’t have done this without your organisation and knowledge! Emily and Jess, both who have given up a lot of their own time to help form this project and bring it forward – its great to have you both involved with more stuff in the Trust now too. And Martin from the University of York – one of the leads on the research behind this who has always been accessible and there for guidance and advice. And of course, I can’t name you all but everyone who has supported this projected at any point throughout – we have some amazingly committed, experienced and enthusiastic people involved and working alongside you all has been a privilege!

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.

It’s All About The Timing

I speak a lot about my mental health. It’s my job. But on of the areas I’m less likely to talk about is my Eating Disorder. For some reason there is a lot of shame caught up in every aspect of my Eating Disorder and I tend to downplay its effect on my life, maybe because of my fears that people will turn round with the dreaded “but you don’t look like you’ve got an eating disorder” comment.

I do have an eating disorder. And I don’t think I’ve ever not had an eating disorder. The earliest memory I can place a time stamp on was when I was nearly 3 years old and it is to do with guilt surrounding food (specifically McDonald’s) … 3 years old. My main memory of my primary school years is sitting in orchestra worrying my legs were splaying out too far on the chair, complicated dressing contortions in the PE changing room as I was so afraid of people seeing my “fat” body (for the record I was a perfectly normal, if a little short and ginger-haired child), sitting in certain positions on the floor in assembly because I worried that having to sit cross-legged made my knees look fat, feeling like I was never good enough because I was fatter than all the other children. I never spoke about my feelings around weight – I kept all these thoughts inside until I was 17 and it started to manifest itself as an eating disorder – since then I’ve starved, calorie counted, over exercised, binged and purged, thrown up in secret in a desperate attempt to appear normal, I’ve abused laxatives, taken diet pills, restricted fluids and most things you can think of. I’ve been overweight, underweight and normal weight. I’ve had a resting heart rate of 37, blood in my vomit, blocked every public toilet in a Jordanian hotel I was staying in, gone to Morocco and eaten only cheese sandwiches, gone to Mexico and eaten only cereal. And that’s only scratching the surface. This eating disorder has affected every inch of my life for 2 decades.

My first career was as a primary school teacher. I used to look around the classroom at my 30 charges and wonder how many of them were silently having similar fears. I think that’s one of the (many) reasons I left teaching.

My eating disorder is totally separate to my other mental health problems, but yet it’s intrinsically interlinked with them all and everything in my life. I’ve always had an eating disorder and I believe I will continue always having an eating disorder. But it doesn’t mean that I’m always actively IN my eating disorder. I can go years doing pretty well, but I’ll always be vulnerable to sliding back under those quiet and enticing waves.

I’m nearing the tail end of about 5 months of OT support from SYEDA (South Yorkshire Eating Disorders Association – a local charity). And it’s pretty successful in the grand scheme of things. I hadn’t really thought I’d been doing that well (and I put a lot of any successes down to having support workers at home who do help me manage meals) until my OT reminded me of where I was in November when we started working with each other and I can’t deny there has been a lot of progress.

So I got to wondering why? Yes, this OT is great, she’s lovely, brilliant at her job and understands eating disorders so well and isn’t phased by my other mental health and life issues – which has a lot to do with it. But I have had treatment with other great professionals for my eating disorder over the years. So why has this one felt so much more right?

I’ve had a myriad of eating disorder interventions over the years. Inpatient, day service, specialist unit, support in mental health unit, support groups, OT, CBT and CAT and everything in between. But a huge difference with this one is timing. I realised things were starting to go downhill and spent a couple of months failing to turn things around and accepting that I did need help. SYEDA re-opened their referrals for Sheffield, I referred on the Monday, was seen for an assessment on the Friday and started OT sessions barely a fortnight later. Yes I was anxious, but I still wanted help at that point. The difference is that every other time I have received help it has been a long long time after I have needed (and asked for) it.

The first time I was taken to my GP as a teenager by my mum, We were told by the GP “it’s a phase, she’ll snap out of it”… I was just 18, I’m now 33 – not a particularly accurate prognosis. I then also fell down the “gap” between CAMHS and adult services, then I didn’t fit the very strict weight criteria. I had a few things here and there but I didn’t have substantial help with my eating disorder until I was 24. I then spent 4 solid years in one type of treatment or another which gradually got replaced by mental health problems taking precedent. I never fully recover. Just get to a manageable point. But I do believe, had I had help as a teenager I may not have had such a long battle for the rest of my life.

The last time I was in Eating Disorder Specialist services a couple of years ago it took 7 months and 3 failed referrals before I was able to access an assessment. When I was assessed it was at the point that I actually started CBT the week after. I worked really hard and the help I got from the service was outstanding but I never regained where I was before that relapse – which eventually turned into this current one “a second wave”.

The average time between a person seeing their GP for the first time with an eating disorder (which probably already comes a significant time – even years or decades – into someone’s illness) and them seeing a specialist is up to 40 weeks. People die in that time. I’ve known people who have died in that time. The infamous “postcode lottery” to health service access is no more pronounced than it is in the field of Eating Disorders. Young people being sent from the south of England to Scotland because it’s the only bed available is all too common.

Early intervention saves lives. And not just in the literal sense. It can give people their life back instead of spending decades in a miserable world obsessed by food.

Leading from every angle except the top…Participating in the Patient Leadership Training Programme

In January this year (2021 for those of you in the future), I took part in a Patient Leadership Training Programme – created and lead by David Gilbert – a person who has been working in the field of Lived Experience roles and patient leadership for a fair while (I’ll be polite but he’s been working in patient leadership for longer than I have been alive so he knows his stuff!). He created InHealth Associates http://www.inhealthassociates.co.uk 10 years ago to train, consult, research and champion patient involvement and patient leadership. He’s written a cracking book too (The Patient Revolution – How We Can Heal The Healthcare System) which is well worth a read regardless of your background of involvement in healthcare. The experience gave me a lot of food for thought…so I did a little blog about it…

I work in the NHS, in a mental health and social care Trust as a Patient Ambassador in Medical Education and Research, I also wear several other hats including in service user feedback and engagement and experience. For many years my only identity was as a patient, I was constantly in and out of hospital, labelled as a “complex case” (aka we don’t know what to do/don’t have the resources to help you) and was unable to hold down a job for more than a couple of months as I would become too unwell. However, I’ve been in this role for over 2 years now, and grown in skills and confidence more than I ever have in any other period of my life. I still am a “patient”, very much so – and one whose care has not always been great (to put it politely) and whose life is very much affected every day by my mental illness. During the 2 and a bit years I have been in my role I have only spent 2 months being able to live independently in the community – the rest of the time I’ve been in mental health units, homeless or sofa surfing – or for the past year, living in my own home with support workers who stay overnight and some of the day when I’m not out at work and help me be more independent. I’m fortunate to have the most amazing, understanding and supportive managers and colleagues, who – despite the complexities of managing someone like me with many adjustments that need to be made to accommodate me in the work place – have been unfailingly supportive of me, even through the tough times. To quote one of my managers “When we decided to employ someone with Lived Experience in the department, we didn’t quite expect the extent to which you would be living the experience”. A common misconception is that people using their Lived Experience in their role are largely “out the other side” and well on their way to the fabled “recovery”. I am very much slap-bang in the messy middle of my “journey”, I’m not fixed yet (is anybody ever?!) And nobody really knows how to fix me anyway. 

I’ve shied away from events with the term “Patient Leader” in the title until this point. It was probably nearly at the 2-year mark in my role when I finally stopped suffering from a crippling case of “imposter syndrome” and went down to a mild case. I hate to say that I was drawn into the NHS hierarchical way of thinking, and only started to consider the possibility that I could be a leader after I had completed some supervision training to begin to supervise service user volunteers working with us in our department. As a Band 4 role, I’m generally at the bottom of the pile in most of the teams I work with. So it was with some trepidation that I signed up for David’s Patient Leadership Programme – as I knew I fitted the patient bit…but did I have the right even to fit the leadership part?

I didn’t really know what to expect. So it was really helpful that a couple of weeks before the programme started, e-mails began coming round from the participants, introducing themselves, their background, their location (across the globe!) and a little behind why they were coming on this course. Several things surprised me from this initial introduction. For starters, I had seen the name of a patient leader who works in my area who I know fairly well – so I naively presumed that everyone else would be from relatively nearby too – at least in this country! But people on the course were from as far away as Canada, Italy and Ireland. Secondly, I had also naively presumed this was only in a mental health context – as my small brain can’t get my head around the idea of patient leaders in physical healthcare. I was wrong again – people came from a wide variety of backgrounds in physical and mental health care and many different roles and experiences in between. Thirdly, I hadn’t put two and two together about the slightly unpleasant timing of 5-7pm on a Friday, and the global nature of the participants until the first session where I could see it was light outside for others. I think lockdown life must have got to my brain more than I thought it had and I hadn’t even considered that this had to be organised to suit people across a variety of time zones! 

Despite the exhausting timing in the day – I can only describe our first session as invigorating and energising. I’ll be honest, by the time 5pm on a Friday came round on a dark, damp January lockdown evening – the last thing I wanted to do was engage my brain or be even vaguely sociable. But the vibe in the (virtual) room was definitely contagious and I found hearing about others’ journeys, battles and experiences with being involved in lived experience roles inspiring and fascinating. Even though we were a disparate bunch in almost every way, there was never struggle for stimulating discussion as we were all tied together by that strong bond of belief in the power of people’s experiences to influence change. I found that even though it sometimes felt like a lot of information at once, in the week following each session I would be going about my daily life processing and making sense of the discussions and debates we’d had. I started to see things in a slightly different (dare I say it, sometimes more critical) light.

Even though the course was only 4 weeks long and never having met most of the participants in real life, I felt like we’d all known each other a lot longer. I really appreciated the no-pressure atmosphere – you could take part as little or as much as you liked, verbally or using the chat function. We checked in at the beginning of every session (which is something I see in basically all patient/service user lead things but so rarely in sessions lead by others) which was really useful and there was a gentle understanding that if it was a tough day – just turning up was good enough. This made me determined to turn up even if time was pressed or the day had been hard.

I can sometimes feel quite lonely in my role – although we have a strong Lived Experience Practitioner (LXP) presence in my organisation which is really helpful and supportive, I am the only person working in the sort of role I do (many are Peer Support Workers) and in the departments I do. It can sometimes be really challenging to explain to people I work alongside that I belong to a “bigger being” than just me – just as a nurse may belong to a nursing union and have a certain agenda as a nurse that differs to that of an OT for an example – I have an agenda as part of a wider LXP movement to bring to my work as part of my role. Although I feel respected and valued in what I do, it can be hard to get your voice as an LXP heard and given equal weighting of that belonging to someone from a “registered profession”. I am an expert in what I do – just as others are experts in nursing, research, psychiatry etc. but it is harder for people to understand that this takes time and effort and commitment. Being an LXP takes huge amounts of self-motivation and self-discipline that is simply un-relatable for people in professions which are more established and where the boundaries are clearer and there is an unwritten understanding that you have to study hard/have experience to understand how to work in that line of work. For some reason, many people seem to feel that the work we do as LXPs is easy, that anyone can do it and learn it. This is definitely not the case and I’m seeing this a lot recently particularly around the reality of co-production and what it entails. This course definitely helped me feel less isolated – as there were people from a huge variety of roles – some of which were more similar to my own, and the experiences and barriers people had faced were different and the same all at the same time!  

One of the ideas we discussed in the first session was that of “finding your gang”. This really resonated with me, and when I went away and thought about it for a while, I realised I did have a “gang” – a group of allies who understood the world the way I did – and that actually it was a lot bigger, more wide-spread and had some unexpected characters in it! This has been a huge source of strength to me in itself (even if those people aren’t aware they are “in my gang”) over the past couple of weeks which have been somewhat stormy in our organisation for various reasons.

I find myself about 5 weeks out from the end of the course, with a new found respect for myself as a practitioner. And I am even using that term more. I’ve learnt to look at things from different angles and in different lights – sometimes I don’t like what I see now – whereas before I might have been blindly satisfied with it. I’ve found myself with a lot more conflicting arguments and debates in my head about what is right, what is wrong, what is adequate and what is tokenistic. But I’ve also learnt that time, and self-control is the best way to approach these things that concern me. Leadership takes time. Service changes take time. I think considering patient leadership is something that takes huge amounts of patience (something I’ve not always been blessed with a lot of), dedication, determination and a very, very thick skin.

Leaders do not need to be at the top. They do not need years of training and qualifications. Leaders can lead from the bottom or from underneath, they can lead alongside, they can lead covertly. Sometimes they can even lead from a hospital bed.

David Gilbert is @DavidGilbert43 on the Tweets and more information about The Patient Leadership Programme and related stuff can be found at https://www.inhealthassociates.co.uk

Caution: Do Not Open This Attachment

Attachment is a bit of a touchy subject for anyone with a BPD label. Whether or not we have attachment issues stemming from childhood, we will probably develop an unhealthy attitude towards attachment during our so called “BPD recovery journey”. This looks different for different people. I have friends that will openly admit and claim attachment to just about anything – including professionals. I know others who have been let down and hurt so many times in their lives that they won’t let themselves form any attachments to anyone, or anything. Then there are others, like me, who are so scared of being labelled as “attached” or “dependent” and the connotations that brings with it within services that they will go to great lengths to force themselves not to feel any attachment to any aspect of their care or interactions with services, or if they do – they won’t admit it.

I’m used to comings and goings. I’m well rehearsed at goodbyes. I’ve lead quite a transient life for the past two decades, across more than one continent. I grew into an adult in the Middle East – where the countries of the Arabian Gulf have a constant ebb and flow of international expats. I’ve been to uni, I’ve travelled, I’ve been in many different jobs, friendship groups and lived in different places. I’ve been in and out of units, hospitals and day programmes – each time with a different population, even if it is the same place. I’ve had more than 8 care co-ordinators in half as many years. I’m used to moving on, I do it well even though I struggle with changes. Everything comes to an end at some point and I accept that and am OK with it.

I’ve also had plenty of constants in my life. My parents live in the same house I grew up in, I still live in the city I was born in (albeit a very different Sheffield!). I have friends who I have known for years. I don’t think I have unhealthy attachments.

So why am I so paranoid at this label? This judgement that just one part of my life puts upon me? In services, showing signs of attachment is bad. But in the rest of my life I am praised for my ability to make appropriate connections and maintain them (though it doesn’t come easily – I have to work hard at this). Even in my work – in the same organisation I receive care from – I am praised for networking, building connections and nurturing them. Log onto supervision records and I’m someone who works well with others. Log into the patient records system and it is a very different story. Suddenly I’m this clinging gremlin who needs to be shook off. Overly dependent. Must be cut off. Must not do anything to build up too much of a rapport because the dreaded “attachment” might occur.

So I don’t let myself do it. I presume I should not show any emotion or feeling when things suddenly chop and change. I wait on edge – preparing myself for when it is pulled away. If someone asks me how I feel about it I will automatically say “I’m fine, it doesn’t bother me”. I am a robot. Robots don’t have personalities. So their personalities can’t get disordered. Robots are not sentient beings, they don’t need anyone else, they don’t need attachments. I have to prove I have no attachment to any aspect of services. Because that is what people want of us. I had one clinician last year tell me “Oh I never tell “PD patients” if I’m leaving because it just causes me problems before I go.” Incredibly sorry for your inconvenience – we’re just trying to navigate this minefield!

I am the same person who goes to work, as I am the one who walks into an appointment. But suddenly what is good becomes bad and what is bad becomes good. Right becomes wrong and wrong becomes right. How am I supposed to know what is right in the world? Yes, maybe some of us do have difficulties knowing how to form appropriate attachments – but put yourself in the shoes of someone who is constantly being given conflicting messages about what is “healthy”. Is the behaviour you’re “observing” the result of a personality defect or is it simply because the person is confused and doesn’t want to get hurt and either clings or pushes away in a desperate act of self-preservation.

I hear many clinicians say “Oh its so hard to work with BPD patients, because we don’t want to run the risk of forming attachments” Replace the word “attachments” with “a healthy, trusting, reliable and working relationship” and suddenly that sentence sounds completely bizarre doesn’t it? By running the risk of creating an “attachment” you are also running the risk of providing a safe space for someone to explore themselves, nurture and grow – and ultimately fly the nest when they are ready. Because that’s how a healthy attachment starts and ends – naturally.

You are a human being. The best way to care for someone is to use your skills as a human being and not go against them.

Why We Can’t All Wear Face Coverings

People who see me out and about and at work will know I don’t wear a face covering. I’ve largely moved past the intial “why nots” and most people who know me fairly well know it’s potentially not a subject to probe too much about. But that doesn’t stop Joe Public from asking questions and making judgements.

I don’t wear a face mask because of mental health issues. I don’t understand the reason why it bothers me entirely, but I understand it upsets me enough that it would not allow me to safely navigate my daily life if I forced myself to wear one. I’m constantly avoiding and managing other every day triggers, I don’t need an extra one. All I know is that even if someone starts suggesting that I wear one, I start panicking instantly, struggle to not dissociate and start losing my ability to speak. I may or may not burst into tears too. I strongly suspect it’s tied up in the reason I struggle to speak at times.

I’m not being fussy, I’m not doing it because I don’t want to protect other people, I’m not doing it because I don’t understand the risks, I’m not doing it because I can’t be bothered, I’m not doing it because it’s a little bit uncomfortable and annoying. I’m not wearing a mask because it causes me real and valid psychological distress.

However, as ever – people are very much caught up in their split second judgement of me as a person, often forgetting that not all disabilities are visible. I’ve had “but you’re on roller skates you can’t possibly struggle breathing with a mask”, “that’s so selfish – we’re all putting up with the discomfort, do it for other people if not for yourself”, I’ve been refused to be served in shops despite showing my exemption card, I’ve had other people travelling on buses kicking off at the driver because I’m not wearing a face covering. I constantly feel guilty and very aware I’m not wearing one and what people will deduce about me from that.

I know so many people with mental health problems who struggle with masks – whether for some people that’s wearing a mask themselves or if it’s the sight of people around them wearing a mask. Roots of the issue stem from trauma, sensory issues, anxiety and panic attacks, not being able to read or recognise people’s faces or emotions and many more. They don’t need to explain to you why they are not able to wear a mask – just “it’s not helpful for my mental health” should suffice.

One positive of the guidance around wearing face masks is the increased recognition of the sunflower lanyard scheme – which has been around for a number of years but not well recognised before it started being used by people exempt from wearing face coverings. The green and yellow lanyard and accompanying cards is a way for the wearer to communicate that they have a disability that may be hidden and therefore may need some adjustments or assistance to help them go about their day. I find mine invaluable in just being able to alert someone to the fact that I might struggle but without wearing a sign indicating I’m a little bit mad.

So if you see someone not wearing a mask. Don’t get on your high horse immediately. There may be a good reason why they have chosen not to wear one and if you see someone displaying the hidden disability sunflower – be aware that navigating daily life might be that little bit more complicated for them.

Behind The Scenes

The 25th October marks 1 year since I was discharged from a traumatic placement in an inappropriate mental health facility with no clear plan of action. I was very unwell, unable to work and was launched out into my already most difficult part of the year with no clue where I would go or how I would survive. I didn’t think I could survive. But I am still here, it’s not OK and it’s not plain sailing but I survived.

As I was discharged I was told funding had been secured for 16 hours a day of support from personal assistants to live in my own home (sounds like a lot but it’s not when you consider the fact most of that is used overnight and due to my PTSD I cannot access my house without support from another human). But we had no idea how that was going to be used, where the support would come from, how to release the funding…anything. I had rented a house as I was told to do. But I couldn’t live in it. It would be 4 months until I was able to move in – during that time I lost all my savings paying rent and bills on a house I couldn’t live in – my salary doesn’t cover my rent and bills each month and if I am on sick pay I am nowhere near.

For 6 weeks or so, after a couple of days at crisis house and away in Switzerland avoiding bonfire night, my friends and family desperately tried to support me living in my home. I spend some time on the psychiatric decisions unit and the staff were great but it is a glorified waiting room with no beds and not suitable for the overnight stays I was having. I was still so unwell I couldn’t go out alone and the pressure was too much for me and for them. I was in a constant state of crisis and that would regularly be pushed out into the public domain. I had a particularly difficult situation where I was sectioned by the police on a tram and it was covered in the local newspaper. Although I was anonymous in the article, reading the judgemental comments people made was really painful.

It eventually all came to a head. I had tried repeatedly to ask for help from the mental health team and had been turned away. I had asked that morning, and the police and the skatepark and friends asked on my behalf. It was the end of November. Freezing cold. I remember being surprised at seeing Christmas lights up as it was so far from the reality of my world. I didn’t know where to go. I felt like such a burden to everyone. I don’t want to go into details but I was encouraged down from the edge of Manchester Airport carpark by the only friend I would have been able to pick up the (video) call from in that state. Alerted by my friends back in Sheffield who had become concerned and started a search. I was taken by police to be assessed at Manchester royal infirmary and then transferred back to Sheffield. I then spent the 3 weeks leading up to Sheffield living in a waiting room on the psychiatric decisions unit. I had no bed or privacy but the staff tried their best to support me.

A couple of days before Christmas I was given a reprieve. 6 weeks at Crisis House – a warm, homely environment with staff who I was familiar with. This was a totally out of the box decision as Crisis House is usually only a maximum of 5 days. During this 6 weeks I went from not being able to go out alone, to being able to travel to another city alone. I went from 4 months off work to working all my hours again. We went from no idea about how to go forward with support at home to having recruited a full team of PAs. I moved into my house at the beginning of February feeling much stronger and more optimistic that finally I would be able to move forwards, work on the psychological stuff I needed to and live in the community.

Unfortunately it has not been that straight forward. I have not received psychological input, nor is there a plan for that. There were initially issues with the PAs and management of the care package (now, thanks to a fab new team that is easier to manage). It was very hard having to be out of the house all day every day. And then COVID came.

The world wasn’t ready for this, and only 6 weeks into the care package – neither were we. I suddenly found myself with nowhere to go in the day with everywhere closed and friends not able to come round. Some fab friends put me up for a while when most of the PAs refused to work but I found myself working 2.5 extra days a week because it was the only place inside that I could legally be. I didn’t have the weekends to rest. It was hard and it was lonely – everyone else was locked up but I was locked out and not many knew how that felt. I found myself wandering a silent city, sleeping rough at times and still dragging myself to work the next day. Things were dark and I couldn’t see a way out. Every solution seemed to be blocked, and with little mental health support I had 2 very serious suicide attempts within a month – both which required admission to resus and have had lasting physical effects. I didn’t get the luxury of having time to rest and recover physically or mentally. I couldn’t take annual leave as I had nowhere to go. So I kept on going. 36 hours after being in resus I was back at work pretending everything was normal.

The year hasn’t been a total write off though. I have become a lot more independent. Cooking, which is something I struggle with hugely has improved greatly with the help of the PAs. When we were starting to be allowed to meet more people I loved getting back into skating again, initially in the street and then in skatepark again. I’ve made new friends and rekindled old friendships. At work I feel so much more confident – lockdown has meant I actually had more opportunity to take the lead on projects and I feel I’ve learnt more skills and made new connections. I’ve got into gardening and turned my minging yard into a beautiful yarden. I’ve got my two little ratty boys Enrique and George who make me smile every day. After a few staff changes, my PA team now are great, they know me, they work together to get the best out of what we have. It’s frustrating for them – with no guidance, training or supervision when things get hard. It’s frustrating for me, feeling like I’m trying my best but getting nowhere. I still only get one daytime at home per week and it’s exhausting. I’m responsible for management of the PAs – rotas, timesheets, communication etc. And that’s tiring on top of everything else and such limited time at home. But they try to make life as easy as they can for me by being flexible and agreeable.

So we find ourselves a year on. My challenging time of year is still challenging – and this year I can’t escape to another country so I have to face it head on. I’m struggling – my nights involve nightmares, flashbacks and going missing so I get very little sleep and occasionally will have walked a long way in the night. But still I leave the house at 8am every day and can’t return until the evening. Friends are helping where they can – I’ll be honest, sometimes we have to break the COVID rules – they are not sustainable for someone like me. My PAs are being supported by an external person providing supervision pro bono and I’m so grateful for that because I don’t know where we’d be otherwise. I’m scared because I’m getting unwell and I don’t have the luxury of doing what I need to to make myself feel safe. I’m scared because the funding will run out soon and as far as I’m aware that’s it, I will not be able to access my house at all again and that’s scary.

I try to live my best day to day – seeming like a normal member of society. Turning up to work, being proactive there and taking on new things. Helping support the skate scene in Sheffield and Yorkshire. Seeing friends and supporting friends where I’m able. But behind the scenes there is so much going on and so much uncertainty looming around over my head. I’d give anything for just the constant knowledge that a safe place would always be there.

I’m still here. And I’m not planning on going anywhere. I’ve survived worse.

A Recipe For Good Care

As a service user you become expert in a variety of skills – some useful in very specific scenarios (quickest time to commandeer a real plastic mug after admission to a psychiatric ward) and some more useful in every day life (which combination of buttons to press on the council’s benefits telephone system so you actually get to speak to a real person every time). But you also become an expert in what constitutes good and bad care.

I can spot good care. I can spot bad care. I can spot bad care where the people are trying their best to get it right but just got it a bit wrong. I can spot where people are trying to give good care but the system is getting in the way. I can spot when I’m being cajoled into thinking I’m receiving good care to cover up the reality of bad care. And a majority of other service users I know will also be able to give you this information about any service/professional/appointment they have encountered. We may come with messy coatings but inside our interiors are sharp and on the ball. If you honestly want to know how your service is working – listen to your service users. We know our stuff.

I think there is a bit of a presumption that all we do is rant about bad care/are never satisfied/always want more etc. etc. But I can 100% confirm to you that when I receive good care – I literally want to shout it from the rooftops and tell my grandma’s ex-neighbour’s niece’s dog about it. And invariably, the things that make me feel I am receiving good care do not involve a degree in rocket science – but just a simple understanding of humans, a non-judgemental approach and often a bit of banter on the side.

I want to tell you about a recent very positive experience of care I received. Because it was outstanding. Nothing ground-breaking was needed to provide this care. The people providing it were just human, communicated well with each other and with myself, and respected me as a person and my knowledge of myself. None of these people were specially trained in mental health. This experience was in a general hospital – in a ward that doesn’t get many mental health patients through its doors. Which just goes to show its not books, letters after your name or years in study that facilitates people to give good mental health care – it is simple compassion and open-mindedness.

The ward in question is a ward that has dealt with me a fair amount over the last two years or so. I end up there because of something connected to my mental health. Specifically something that is triggered by past (and sometimes current) trauma, so I’m invariably not the happiest bunny when I’m there. My mental health is complex, especially in certain environments and I acknowledge I can be a challenging patient to have on a ward. This ward was no different in experiencing the challenges of Ellie, but they were very different with their response to it. Since my first visit there, this ward has become the only ward in that hospital to send staff on our mental health training for teaching hospitals staff. They weren’t obliged to do this, but they did. And that’s important.

My recent experience on this ward came 9 months since my previous visit – something that upon arrival, the staff immediately congratulated me on and commented at the obvious (positive) difference in my mental state since last time. This not only made me feel less like I’d failed and let everyone down, but made me realise that although I had slipped up, I still was making progress.

I waited for the doctor to arrive and when she came she had come prepared with my folder, which had notes and recommendations from my previous visits and what had happened and what helped. She had also spoken to other staff about this and exclaimed that she remembered me before and it was nice to have a proper conversation with me. I was sat on the floor in a bay by myself, the floor feels safest for me, particularly if my back is up against a wall. She came and sat down next to me. Note, not in front of me – blocking my exit – but next to me, indicating that she was willing to go on this journey beside me. We sat and talked for a while before attempting the procedure I needed. She spoke about how I presented last time, asked me what helped? Did I want anyone there with me? How would she know when I was too distressed? How did we want to proceed with this? Was the best place to do it in the treatment room or would it feel safer where we were? We decided that it would be easier on the floor, I played my grounding playlist which she commented on and sang along to, and I was allowed to get my pink toy bunny out. In the meantime a nursing associate who had built up a good rapport with me in the past came and as a three we discussed how this might pan out and how things were at the moment.

I tend to get very distressed when this particular procedure is undertaken. And one of the first things is I will become mute and unable to communicate verbally. This didn’t phase any of the staff and they carried on talking to me like I was a human being. We did struggle with me tolerating the procedure. But I was assured that even if we did little bits with a 5 minute gap in between each try, if that was how I preferred to get it done then they could stay as long as it needed. She didn’t push me too far into distress each time and recognised when enough was enough. Eventually it was apparent that we would need to get it done under general anaesthesia – which is not ideal but was necessary in this situation.

The anaesthetist came up to join us, and again – wasn’t bothered by my inability to speak but addressed me directly and waited as I responded by typing on my phone. The staff bantered gently around me, picking up on things they knew I found interesting/funny – such as falling at roller skating or working in the NHS as we discussed the best course of action. Because of a combination of my complicated home situation, not particularly being very calm at night in hospital and a need to get the procedure done sooner rather than later – we came up with a plan that would involve me going home that night and coming back in the day for surgery tomorrow. The nursing associate advocated for some of my needs that she was aware about. I taken through the operating room procedure and differences due to COVID. Again, I was asked what would help – including that I would be the one to hold the mask to my face to put me to sleep. I was taken home and had a night in my own bed to prepare.

The next day I was kept up to date with what was happening with the surgery list – the staff made sure that even if they didn’t know what was happening, they came to let me know that – instead of leaving me to worry and wonder.

When I was taken down to theatre, the staff understood my difficulty wearing a face mask and allowed me to use my pink bunny toy to shield my face (he also smells of parma violets and this helps me stay grounded). They bantered about the colour of my hair, the name of my toy (pink bunny), and debated the colour of the toy (the anaesthetist thought he was purple which was slightly disconcerting). The anaesthetist was different to the one the day before but he, and the other staff were aware of what my specific issues were and how to help them. One of the nurses explained that she wouldn’t be allowed to stay in the room during the intubation process because of COVID restrictions but she would take care of pink bunny. Normally I would lose my speech before even going down to theatre but this time I managed to stay speaking up until getting onto the operating table – which says a hell of a lot about the efforts of the staff to keep me calm.

When I came round, I experienced my usual distress of not realising where I was. But even this was less than before. One, the nurses reintroduced themselves from before, told me I was safe and where I was. Two, they were waiting with extra blankets which calms me down. Three, they recognised that getting me back up to the more familiar ward environment sooner rather than later was important and lastly, but by no means least – when I came round, pink bunny was in my arms – and on his leg he had his very own hospital name band. In a weird way, the fact that someone cared for my soft toy was even more important than them caring for me!

It just goes to show, that its the simple things that really help. No-one wants to be in hospital – and i can definitely think of plenty of other ways I’d prefer to spend two days of my life, but it was considerably less difficult and traumatic than it could have been and I left feeling like a valuable human being, who hadn’t messed up big time, but who was on a journey with ups and downs and by sharing that journey with others was able to help them learn for the next person.

So if you find yourself wondering how on earth you can provide good care. Just think back to the basics.

So to conclude, a recipe for good care:

  • Set your mode to “human”
  • Line with common sense.
  • Two cups of good communication.
  • A pinch of openness.
  • A generous glug of compassion.
  • Careful siphon off any excess judgements
  • Mix together with knowledge of your service user as a person.
  • Serve with a side of banter if required

Tongue-tied – what it is like to experience mutism

I received a lot of positive feedback on my first blog post – thanks to all those that read it and people that have given me feedback. I hope it continues to be something interesting and informative.

I have a couple of ideas of topics to cover in my next few posts and the order is probably going to be quite arbitrary and more to do with if I feel up to being able to write about a particular subject at a time. But the topic I’m going to be writing about here is one that is almost the polar opposite to the subject of my first post – and that is NOT talking.

People who know me well (or even those that don’t know me well at all) know I’m a bit of a conversationalist. I’m easily bored and not a huge fan of my own time and having stimulating conversations and debates with others is really important to me. It’s also kind of necessary to do a lot of talking in my job – especially the teaching and training parts. But what people don’t always know when they first meet me (or indeed if they met me many years ago) is that at times I am entirely unable to speak. It’s not something that I tend to open first encounters with – my mutism usually catches people off guard the first time they experience it.

This is not that I don’t want to speak, that I’m shy or have not got anything to say (I ALWAYS have something to say) or that I am being rude – it is that I am physically unable to undertake the process of speaking. For me it is a physical sensation – literally as if my tongue has been glued to the roof of my mouth. I can be doing something totally alone and not happening to be speaking to anyone and I will suddenly realise that I no longer have the power of speech. 9 times out of 10 it will have been preceded by some sort of factor that creates a lot of anxiety for me – usually but not exclusively to do with PTSD – but it can also occur when I’m overly anxious or overwhelmed generally. Sometimes I can’t quite pinpoint the reason for it but I do know that the more anxiety-provoking situations I am in in a day the higher the likelihood of me losing my voice for a significant amount of time.

I am not CHOOSING not to speak – it’s really important people know that. It’s that I CAN’T speak. But I would really like to…it makes my life easier!

Looking back I think I’ve actually had some sort of mutism forming for years – but was something that used to only occur during periods of dissociation (which I didn’t realise until a couple of years ago was what I was experiencing (and indeed claimed I didn’t dissociate for quite a number of years but it’s kind of hard to avoid now as it does affect me on a daily basis)) but has grown in the past couple of years to something that can sometimes last up to a couple of days. The more complicated and traumatic situations I find myself in and the less empowered I feel over my life the more the mutism grows. I don’t know much about mutism in adults – it’s not all that common compared to in children but it is often linked to trauma unless there is a root in some sort of Autistic spectrum disorder. I suspect it may stem back to my general need to be in control – but it doesn’t really make sense because being mute really does mean you have a lot less control on the things around you!

When I lose my speech I feel embarrassed. I feel frustrated. I feel like people must be judging me and thinking I’m rude or disinterested. I am trapped usually with a lot of stuff I need to talk about but no way of getting it out. Yes, most of the time (though not always) I can type or write – but conversations this way are difficult and often taken wrongly not to mention how long they take! I put a lot of pressure on myself to “just man up and speak” but this only makes the situation worse. Sometimes I can be very distressed and mute and may be struggling cognitively to even process what is going on around me. Or sometimes I can go about my day perfectly normally but silently – when I’m like this I can hold conversations, I can joke and laugh and do team activities, I can travel about…but all in absolute silence. Friends have observed how bizarre it is when I find something funny and collapse into silent giggles but equally how weird it is to see someone crying hysterically but totally silently. (Though on certain levels of PTSD-trigger occasions I do make a noise but it’s more like a roar than any noise a human would normally make).

Not speaking gets in the way of a hell of a lot of life things. I often can’t call for help when I’m distress. I quite regularly have to cancel meetings etc. because there is no point me going. Yes, I can be on the edge of social situations though it’s difficult to really get involved without speaking – a lot of my good friends are very good with trying to include me or being patient waiting for me to type a note on my phone to be read out to the group. It makes it really complicated to get out of stressful situations without being able to properly explain. I also find that depending on the situation, people can treat me very differently to how they would treat me if they met me speaking. I regularly have people thinking I’m deaf and going to Oscar-winning lengths to perform whatever it is that they’re trying to communicate with me – which has given me an insight into how it must be like for someone who is actually deaf. People often treat me like a child – talking in a very patronising way to me (to be fair I do look about 16 on a good day and if you add crying and optional roller skates into the picture that brings it right down to at least 12!) The best scenario is when someone treats me just the same as they would if I was talking – just with a little more patience and time to accommodate for the conversation.

My speech can sometimes be gone for a couple of minutes or sometimes it can be gone for a couple of days. Or sometimes it struggles to return fully throughout a day. When I do start getting my speech back often my first words are more like indistinct noises and I can struggle to speak clearly for quite a while. Thinking and forming words is a really brain-heavy process and it takes some effort I can assure you! I can also sometimes experience my voice starting to disappear- I will still be able to speak and people who don’t know me well probably wouldn’t notice the slight drop in fluency and eloquence but people who know me well will often pick up that I’m not at full capacity.

So if you come across me and I don’t acknowledge you. Or I don’t seem my usual self and don’t contribute to conversation or cancel a meeting or a talk or something – don’t take it personally, it’s not me being lazy, unreliable or unfriendly – my voice might have just gone walkabouts and I’m working my hardest to get it to come back! Treat me like you normally would and just give a little more time.