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

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.