“With great power comes great responsibility.” Whether or not Louis Theroux has great power is maybe up for debate, but he is certainly an influential and respected figure. You only need read the reactions on social media to any announcement of, or feedback to any of his documentaries to know that he is both highly respected and revered by millions across the world. I include myself amongst his admirers. Indeed, I’ve spent many hours watching his in-depth look both into the lives of the rich & famous and tackling the dark worlds of subjects such as alcoholism and America’s gun culture. His unique method of engaging with the contributors, of gently exploring underneath the shell of the issue to pull out often difficult stories of why they lead the lives they do, is both skilful and, in some ways, really quite endearing. From a viewers perspective you can’t help but feel like you’d want him as a friend, a confidant, someone with whom you would run to if you were ever in need of a shoulder to cry on, not because he would necessarily have the answers but because you know he’d ask the right questions and would listen.
So, you can understand why when, in March this year, I was contacted and asked if I would be interested in taking part in a documentary in which Louis would explore the mysteries surrounding anorexia, I readily agreed. It would be an opportunity for me to fulfil two things. First, as someone who is passionate about showing that anorexia can affect anyone, regardless of gender, age, background, sexual orientation, and equally as passionate about ensuring that nobody ever gets to where I am now and seeks help at the earliest possible opportunity, I knew that I would get a chance to lend my voice and tell my story to an audience potentially far greater than most other documentaries that had been made to date. Secondly, it would be a chance to meet Louis Theroux. If you’re an admirer of his and the opportunity comes to take part in his work and you’re willing you’re going to want to do it, right? Let me make this abundantly clear however, the first part is the most important. It was never about getting my face on the TV, there are much nicer ways of doing that and anorexia is not something I want to be known for (quite frankly it can get stuffed). However, I would do anything I can to stop someone who is heading this way in their tracks and to seek help, and that was my sole intent in agreeing to do it. Meeting Louis was the “nice bonus.”
Between March and July I met and had discussions with the producers who explored more about how anorexia had & is affecting me and what would happen when Louis came and filmed. When that day eventually came it was what you would expect from a viewers perspective, however being the subject was very hard. Nothing quite prepares you for the reality of how Louis does things. There’s no secret way he does it, it’s all as you see it on TV, but it really can break you down in the moment. My interview largely centred around me engaging in something I do a lot – baking. I made Louis & the crew flapjack whilst he interviewed me, asking me about how the illness affects me day to day, how it gradually became a feature of my life, what influences allowed it to take hold of me, what I felt I had lost materially and otherwise. My mum was also included and he asked her about the changes in me and how the impact of anorexia had affected relationships within the family. There were some tough scenes including one when the illness itself stepped in and made me “jittery,” reminding me that I should be taking laxatives and an emotional discussion took place with Louis almost trying to talk me out of it, me breaking down in tears and, in the end, me taking them anyway. Maybe it’s a good thing that wasn’t shown in the end (I’m coming to that), although maybe it should have been – seeing the power of anorexia in its most raw form. There were some lighter moments too. As Louis tucked into a large piece of the finished flapjack he said that I should go on “Bake Off” (I really want to do this people, I’ve just applied!) and we had a good giggle about that. It wasn’t all dark.
As those of you that watched the documentary tonight will know (Louis Theroux: Talking To Anorexia) this was cut from it. I had already been told that this would be the case. They like to do follow up interviews and check on progress and logistically it wasn’t feasible for them. In fact, the documentary featured 4 women staying in 2 eating disorders units in London, entirely not representative of the fact that anorexia (or ANY eating disorder) can affect ANYONE regardless of all the things I mentioned above. I also knew that this would be the case and had already been quite upset. I was upset at being left out without there being any men included and I was upset that I’d laid myself bare to Louis & the production team on camera and didn’t get the chance to do what I set out to, to hopefully make a difference to at least one person’s life, to stop someone ever getting to the point where their entire existence is determined by what goes on in their head at the hands of this illness. It was so important to me that everyone that COULD be affected by this monstrous illness was represented and I really felt, having been part of it, that they would be. That was as important to me as helping to stop anyone getting to where I am. I’m so disappointed that arguably one of the most influential documentary makers in the world has omitted the voices of a true representation of the indiscriminate power that anorexia has, especially as I vocalised how important I felt that was. For me he’s dropped the ball for once, and it’s a great shame.
On the plus side I do believe that they’ve captured some of the true hell that this illness dishes out. The inner conflict, the power it has, how it refuses to let go of its victims and, ultimately, all it wants to do is kill you. If we’re all honest with ourselves, or allow logic in, we know this. But it silences logic all the time – we must do what it tells us, it thrives on our fears. That very fear of letting go of it, of recovery, is what keeps us enslaved. For many recovery comes, for too many it doesn’t. Louis has done well to show why we are as we are and for that I respect what he’s shown. But I can’t get away from the fact that there still should have been a wider representation of the type of people it can affect, i.e. anyone. We spent the time, we had the material, it should have been used.
Don’t get me wrong, one mistake doesn’t change my view. I still think Louis Theroux is a great man, a great documentary maker and I still admire him immensely. The producers have promised to send me a DVD of our interview which is good, I hope that one day I’ll be able to watch it from a place where I have control over my illness as a reminder of where never to go back to. I say control because, as I’ve said in the past, I know that I will never be fully rid of this. But I have hope that maybe, just maybe, I’ll get help one day (if the eating disorders team ever change their mind and actually help me) and find a way to control things.
Sadly, I’ve taken a hit over all this. Anorexia, by it’s nature, will always seize an opportunity.
“They didn’t think you looked ill enough. You weren’t in hospital so they didn’t take you seriously enough. You’re too heavy. Do something about it.”
That’s what anorexia tells me since I took the call just over a week ago. Not anyone’s fault, that’s the nature of this beast, this illness.
I’ve lost just over half a stone since taking that call.
Anorexia. That’s the true voice, right there.
It’s World Mental Health Day. I’ve put a picture of a goat lying down and you’re probably wondering what the hell that’s got to do with anything. You’d be justified in wondering, I would too. I took this picture whilst on holiday last week in Zakynthos. This was the first proper holiday I have ever been on, the fact I was there was a minor miracle in itself, but as I meandered through the lonely hills of the island, away from the hustle & bustle of the tourist town of Alikanas where I was staying, I came across this goat. He was lying in a barren bit of land, attached to a pretty run down small holding, looking pretty glum in his own world. He wasn’t aware of the hardships of the island, the fact that everyone on it works 7 days a week just to make ends meet, that the Greek economy is such that the potential of this island can’t truly be met. The financial infrastructure isn’t there to back it up. The potential is there to see (there are some absolute beauty spots), but the people are letting it go to rack & ruin and seem to be just ticking over, leaving vast areas spoilt by unsightly rubbish and abandoned building projects. The goat reminded me of my own state of mind. He was locked in his own misery, just there with no apparent purpose (although probably used for milk), whilst the world around him carried on doing what it did, whether that be to tick over or, as we are more fortunate than the Greeks, to progress. I’m digressing at the moment – Asperger’s – I’ll get where I’m going shortly.
An update on my health. I’m still where I was, although an admission. I’ve developed bulimia. I use it to keep myself in check when anorexia isn’t enough, when I’m not strong enough to restrict. Wow, I can’t believe I’ve just typed such a weak minded thing, but that in itself is an indicator of just how bad I am. So, anorexia, bulimia, borderline personality disorder and Asperger’s – it’s little wonder that my latest letter from my psychiatrist again uses the word “complex” to describe my case. My weight is low, my strength is rubbish and my mind weak. My mood is stable but best described as “numb” and I’ve got little appetite for life at the moment. I have no goals to speak of and there are no treatment aims being talked about. The eating disorders team have made no contact since putting me on this “break” and I can’t see that changing. Heaven knows what will happen. Maybe the posts will stop one day – and that will be a sign that the whole thing ended badly. So yeah, that’s that. Oh – Wolves are doing well though. There has to be ONE positive, and that’s one that will always make me smile!!
So, World Mental Health Day. Why do we have to have one day when attention is brought to this issue? Should awareness not be something that should be accepted by now? Is it a case where for one day everyone is made aware that people suffer with mental illness and tomorrow people forget? Does the media forget that for people like me and the millions across the world with a mental illness there are 364 other days where this is STILL part of our lives? And WHY is this still needing to be highlighted in the way it is? Why is there still this stigma? Do we have a World Broken Leg day? Because that’s a normal, that’s something you can see so therefore it’s legitimised. Well let me tell you something. Have a look at me if you ever can. My mental illness has physical repercussions. I’d post a picture of myself in just my underwear if I didn’t think it would be triggering to some people just to show that there are physical consequences to some of the mental illnesses I suffer from. Would it get the message across to some of the ignorant then? Of course it would. BUT IT SHOULDN’T TAKE THAT!
Piers Morgan tweeted this earlier:
“On #WorldMentalHealthDay, a reminder that statistically, this is the safest & healthiest time to ever be alive in recorded history.”
The ignorance in that one tweet sent me to boiling point. He’s probably right, from a physical perspective. From a mental health perspective he is absolutely wrong. Social pressure, world pressure, means that we are probably living in the WORST time for mental health. People don’t realise it, but it’s a fact. How do we address it? It’s up to people with the most influence to ensure that they are using that influence for good, to be more aware of the impact they have on society and on people. And then we need to look at ourselves and how we are toward each other. We need to look within our schools and how children are toward each other. We need to look at how we conduct ourselves and interact with each other online. We almost need to start a collective think tank and start again, we need to learn how to be kinder to one another and see that these brains of ours are not indestructible. They’re fragile, they need looking after. WE need looking after as people. It’s not just our bodies that need maintaining, it’s our minds too. Piers Morgan’s tweet COULD be all encompassing if we learned just to look after each other better.
World Mental Health Day itself needs to be handled better. It’s good that people in the public eye are used to highlight the issue, but what about the people that REALLY suffer each day. The Royal family are all over social media today, pop stars, TV & film stars, all talking about the good work that people do or their own experiences…but what about people who live with these chronic conditions day in, day out? Give us a voice, give us air time. Come and see the reality of how this really is. Only then will acceptance of the legitimacy of mental illness come to the fore.
Finally, I saw Jeremy Hunt speaking at a ‘Time To Change’ event. This man is the Health Minister responsible for the vast cuts in the NHS, not least cuts in Mental Health care. It’s insulting that he is even invited to speak at such events, let alone that he even turns up. The government continues to cut funds, yet more and more people suffer, more and more people need treatment and more and more people die. To say it’s not good enough is an understatement. It has to change. One more death is a death too many. Jeremy Hunt & the government have so much blood dripping from their hands that I’m surprised they are able to grip a door handle. I couldn’t look myself in the mirror each day knowing I was depriving people of the care so many of us need. It has to change…and we must keep pushing them for that change.
Seven years ago today I drove into Gloucester for an appointment with my psychotherapist. The appointment was at 10.40am. By 11am I was outside the psychotherapist’s building in the back of an ambulance. I was hooked up to a heart monitor, having injections into my stomach and listening to paramedics tell me that I was having a heart attack. For the next few days I was to battle for my life until I was stable enough to have a life saving procedure to have two stents placed into my heart. I guess today could therefore be classed as an anniversary, the anniversary of the day that I almost died. The day that my body almost gave up on me. The day that over-eating, drinking and smoking took their toll on my heart and it said “enough is enough. I give in.” The weird thing is I was at my psychotherapists, it’s an oxymoron. Twelve months before that point I’d tried to take my own life because my mind was broken, but I was in a better place at the point where my heart decided to work against me.
Fast forward to today. You would think that I would be looking back and reflecting on the fact I survived. I should be using it to help me change where I’m at now, to drive me onward in my battle with Anorexia, Borderline Personality Disorder, anxiety and to help me better manage my Asperger’s traits. I’m glad I survived and been able to enjoy the times I have up until two years ago when Anorexia came knocking. However, if I’m being wholly honest, lately I have been spending a lot of time locked into a mind-set of wondering whether I would be better off not being here at all. This might sound dreadfully defeatist, a little self-indulgent in the misery stakes and might provoke annoyance in some people. But when you are faced with this illness, and have been for so long, when you aren’t getting the support you so desperately need and you are living the same routine each and every day with no end in sight, you really can’t see a way out other than the eternal comfort of the never.
What have I been doing lately? Very little different. I’ve baked a lot. Most of it has been very driven by the eating disorder. Sometimes the compulsion is so strong that I just make something and then get angry and throw it away. Most of the time I make stuff and Mum takes it away for herself, my step Dad and her friends & neighbour. I get inspired by Bake Off a lot and try and recreate a lot of the things they are making. Don’t get me wrong, this isn’t all ED inspired, there is a creative element there and a joy. I just can’t indulge in any of it, there’s no way anorexia will allow it. If only.
I’ve been to all Wolves home games so far. I leave 5 minutes before the end of each game to avoid any kind of chance of getting crowd panic. It cost me the other day when Danny Batth scored a late equaliser, but that’s the price I pay to keep myself feeling safe. It’s a struggle at times, especially feeling week and having to amend my ED habits, but I tend to just not eat at all on match days. It’s easier to keep the ED voice quiet. At least I get to go!
But that’s the thing – dancing with the devil in my head in order to do anything I want to do takes away the full pleasure of doing things. I hate that. Why should I have to compromise everything in order to do anything? This is why I spend 99.9% of my time locked away in my flat watching Netflix and running back and forth to the bathroom. This is why I wonder whether I would just be better of having not survived seven years ago, or not surviving now. I’m going on a week’s holiday with mum & my step dad shortly. It’ll be nice to get some sun but, of course, the whole thing will be tempered by the ED and a lot of what I wish I could do I won’t be able to. When I get back I had been thinking of just giving into everything the ED wants and just allowing it to slowly take me for good. I echoed this to my CPN recently. I have a new referral to a psychologist as a result. Hopefully this will lead to some more meaningful treatment because, again, nothing has been happening. I’m still eating next to nothing, getting lighter, bombing laxatives, walking when I can. Still no ED support, no therapies elsewhere. I had to have a course of injections to right some imbalances in my bloods. Physically I’m a wreck really.
The life I wish I could have isn’t there. I can’t get it back myself. The professionals don’t seem able to help. The system is failing me. This anniversary – I wish I could celebrate it. I survived. I can’t celebrate that. What a shitty illness this is. Fuck you anorexia. You are worse than that heart attack. That was fixed by two stents and the skill of a team of doctors. You have far more power and you are looking more likely to kill me. Bastard.
Fingers crossed for that psychologists appointment this week.
There has always been a need for mental health issues to gain greater media coverage to ensure wider understanding and breaking of associated stigmas. Thankfully, over the past few months, there have been a number of high profile campaigns to ensure this has happened, and I’m glad to see that on the subject of eating disorders there have been a few stories run. I myself have been both the subject and included in a few of these stories, and have always agreed to do them for that purpose; to help educate and encourage anyone suffering who hasn’t already got help to do so.
Tomorrow (24th July), BBC Panorama will be broadcasting a programme called ‘Men, Boys, Eating Disorders’ featuring international rugby referee Nigel Owens, MBE. Nigel has been struggling with bulimia for the past 27 years and will tell his story and meet other sufferers throughout the programme. Some of his story has been published today on the BBC news website and can be read here.
I’m full of admiration for Nigel for sharing his story in such a public way, especially in view of his profile, and really hope that this will do exactly what is needed – both educate and inspire those who are suffering in silence to get help. Also, as a man, I hope that it will again show that eating disorders don’t discriminate. They aren’t confined to teenage girls, they can affect anyone regardless of gender, age, sexual orientation, colour of skin or whatever. They are real, legitimate, debilitating and vile illnesses that destroy lives. I urge anyone that can to watch the programme and really try to understand what sufferers go through, as hard as I know it is to understand.
Of course, media attention and understanding of these matters are only one part of a wider issue. The focus needs to continue, and the media coverage needs to maintain in order for people to continue to be educated and inspired to get help. However, in order to get the help needed there needs to be the support services and right treatment available. As I said in my last blog post I have withdrawn from social media in terms of posting about my illness and I’ve stuck to it. I have continued to use it for posting about everyday things, but on the subject of my own health I have said nothing, even when asked. The truth is I continue to be very unwell. Anorexia is grinding me down, depression has crept in and I’m heading toward my lowest weight at any point since I was diagnosed. All eating disorder support that was previously there has now been withdrawn.
As I discussed in that last blog post the ultimatum was day treatment or a “therapeutic break.” As I said then I know in honesty day treatment would cause me far more damage than good and that I’m honest enough with myself to know exactly what I need. However, the commissioners won’t allow it, the NHS cuts being such that the money and options aren’t there, and so I’m without the help I need. Where this will end I don’t know (sorry, I’m repeating myself) but I’m numb to the worry of it. I’m a hamster in a wheel, days are all the same, anorexia has become the larger part of me and I haven’t got the treatment options open to me to help me to fight it.
I don’t believe this is the case for all, however. I think this is a case of a ‘postcode lottery’ and that because Gloucestershire has the day treatment option it’s something that has to be tried first. Truth is I have, it’s just that they insist I try again, ignoring my own thoughts on the subject. There has to be flexibility, they just won’t budge. There’s enough of my mind intact to know what’s damaging and not in terms of treatment. C’est la vie. In other areas of the country I know that treatment options are a lot better for people. Don’t be put off by what’s going on for me – GET THE HELP YOU NEED as soon as you can and be forceful. Meanwhile we must push government for more funding into the NHS for mental health care. Nobody should be held back from options based on where they live, nobody should have anything but the full range of options open to them and EVERYONE should have a voice in their treatment.
Anyone viewing my social media accounts over the weekend might be forgiven for thinking that things might have been improving radically. I say radically given my last blog entry and because both my Facebook & Twitter accounts show a few days that reflect a life that I lost two years ago. However, as I hope people have come to know, the truth behind the pictures can often be very different. These mixed messages that I unintentionally throw out can be dangerous, triggering, and can cause me a lot of harm. They are the reason why I have taken the decision to stop posting on Facebook and limit my Twitter activity. I’ll stop short of removing the accounts altogether as some people contact me through them exclusively, but it’s safer not to post. Allow me to explain my thoughts and clear up the mixed messages.
My weekend began on Friday with a long standing planned trip to Lincolnshire with my brother. I had paid for a short break for his 40th birthday at a fishing lake complete with a stay in a luxury lodge right next to the lake’s edge. This all felt safe to me, my brother isn’t the sort that would pressure me in regard to my eating disorder behaviours and the location was remote enough that I wasn’t going to get overawed by interaction with other people. The lodge and settings were idyllic and, despite the weather not being ideal, our stay was good. I won’t pretend my behaviours were in check, they were as bad as they ever are, and in some respects when pushed were a little worse. However, they didn’t interfere with the stay and we had fun, did plenty of fishing, relaxed and my brother seemed to thoroughly enjoy himself.
We left on Sunday morning and whilst travelling back some seriously leftfield events occurred. There was one thing that saddened me and left me confused. Someone I had been growing close to recently suddenly hit reverse after I believed we were on a level playing field and scrambled my brain. Asperger’s. Relationships of any kind. It’s a toxic mix. I need to stop it. Anyway. I was aware that my favourite festival, Barn On The Farm, had been taking place all weekend. Last year, after 4 consecutive years of attending, I had missed it whilst being in the unit in Norwich. Had I not been, of course, I wouldn’t have been in any place to have gone. Even so I found it distressing that I was missing a festival that I adored whilst so many of my friends and favourite bands & artists were performing. It’s such a unique festival and my experience of it is, in itself, always unique. I’ve invariably been involved with one or two of the acts performing and have been able to have access to all areas. I’ve therefore been able to hang out with and meet some of the big names that have played there. It’s amazing, it’s like one big family year on year.
One of my favourite bands was playing this year, as they have for a number of years now, Amber Run. I had a ticket to see them in September but certain plans mean that I will no longer be able to see them. With this in mind suddenly I had a deep yearning to go to the festival that afternoon. All the fear and anxiety was replaced by a desire to be immersed by their music. Maybe it was that memory of being filled by Paramore’s music a couple of weeks ago, by forgetting everything else and letting the music carry me. How could I get through the rest of the day with 2000 people there? There was sure to be plenty of people there I knew. Maybe that would be enough to get me through and then I could rely on the music. However, I didn’t have a ticket. There had been lots of people selling some before, maybe someone had an unsold one going still. I began to look. Just as I realised this was going to be fruitless a friend on Facebook posted a picture from the festival. He is a sound engineer and had been working for a band there the previous evening. I asked if he was still there and he told me he would be doing the sound for Amber Run that evening and offered to get me in. I will forever be in his debt.
So, later that afternoon I was there. Barn On The Farm 2017. Was it easy? Not one bit. As I walked down that track in the picture I was an absolute bag of nerves. There was one event that made it a LOT worse. I seldom talk about this publicly, in fact I’ve never mentioned it on this blog and I never will after this. One of the first people I saw was my daughter. This was extremely hard. She stopped talking to me almost 3 years ago and has nothing to do with anyone on my side of her family. She has made it known that she doesn’t want people close to her to know that I am anything to do with her and I respect her wishes. It hurts, and there’s not a day goes by when I don’t wish that things were different. Seeing her sparked a whole wave of emotion and I thought about leaving immediately, but she saw me and headed in a different direction quickly, as she did the few times I saw her during the rest of the day. With her was her best friend, the daughter of the woman I was dating at the start of my problems (remember her?) Talk about triggering events.
I stayed. I went and stood by one of the stages, shaking with fear, triggered by what I just described, the people, just about everything that was going on. I’d wanted to run. Then someone I knew, an artist who had performed there many times but was there just to enjoy joined the crowd. I said hello to her and, after several glances she recognised me and greeted me enthusiastically. I was really glad but, again, it made me sad. The fact that I was no longer instantly recognisable made me feel uneasy because I’m not Simon anymore, or, at least, I’m a hidden version. The conversation was so quickly about how I am and not about the festival and the music. I understand, people care, people want to know. Just after that quite a few old friends appeared, including one of my closest friends from a time two years ago before I got so ill. It was great to see him. Great but so very difficult. I know he had found it hard to see me change, to see me fall from where I was to how I am now. I’d heard very little from him since those times and it had made me sad, but I know that this has been the case for so many people. Even people I still have contact with things are not as they were. I am not me, Simon is not the dominant character anymore.
The rest of the day was a paradox. On one hand it was fantastic. When music was the core, when conversations were centred around a time gone by with people from that time I felt calm, ok, good. However, anything about the present was all too real. If I was around food, or being encouraged to eat, or felt enclosed I felt horrible, I felt triggered. I was reminded that whilst I could talk about the past, be reminded of it, that reality was very different. The now is dark, the light is behind me. I can only view it as someone views a photograph, a memory. Reality has to be viewed through the eyes and that’s something I’m forced to do no matter how hard I try not to. I hate it. The worst thing is this; those people I came into contact with from my past all want the Simon in the photograph back. They don’t want to look through their eyes and have what they see before them, they want the memory. I do too, however the reality is different. He’s gone and I have NO IDEA how to get him back. You see, I take the positives of the day – Amber Run were sensational, it was lovely to see old friends and the pictures you can see of me with smiles on my face with those people are real – but the reality is different. I grieve for the same things all those people are grieving for. The Simon they loved has gone. Nobody wants to know who I am now, not even I do.
So why do I want to stop posting on social media? It’s back to the mixed messages. Someone said that it was great to see me making steps forward. Simply put, I’m not. I went because I wanted to hear music. It was great to see old friends. I was reminded, however, that I am not the person I was, or at best that person is buried by the mess that I have become. I’m trapped by a monster who has locked me up in a cage and has the key firmly in his grip. I can’t wrestle that key from him. He’s laughing at me. Whenever someone says I am making steps forward I get sad, angry, distressed and numb all at the same time. I don’t blame people for thinking it – anyone would – but it’s time for me to take control of what I’m putting out there. The best way to do that is to put nothing out. I will continue to blog but the only way people will come to it is if they look. I won’t alert anyone to it anymore. Twitter is different. I can comment on my football stuff, I can comment on a tweet about music. It’s easy, I don’t have to be personal about things. Facebook, however, I’ll keep my account but not communicate publicly. I have to be less mixed.
Maybe one day the photograph will come back to life. Maybe one day the photograph will be all that’s left. One thing is for sure, they won’t be my photographs. I’ve just sold my camera gear. No point keeping hold of things I can’t use. I’ve bought a point and go. That feels a lot more apt. Point and go. No mixed messages.
For the past week I’ve felt like I’m permanently staring down the barrel of a gun or completely trapped. It’s a horrible feeling, a feeling created by the worst of circumstances at a time when I probably need help the most. Those who are in touch with me on social media might be forgiven for thinking that I’ve been making an effort to do a bit more of the things I’ve been trapped from doing. My last blog entry indeed suggests this, but actually things are going badly. Very badly.
I had an appointment with my psychiatrist just over a week ago. He is part of the recovery team, helping me more with day to day integration, coping with my anxiety issues and Asperger’s. During that appointment he posed certain questions that unnerved me, centred around the possibility that I could be discharged from the care of the eating disorders service. I was stunned at the mere suggestion. Lately the anorexia side of things have taken quite a kicking and, with necessary sensitivity, it’s obvious that behaviours are out of control and physical repercussions coming to the fore. The justification for the suggestion was due to the lack of progress or engagement in any meaningful treatment since discharge from my last inpatient admission in February. As I pointed out this had been due to my moving and the eating disorders service wanting to ensure my work with the recovery team being established so that cross agency involvement could be created to devise a way forward. I hoped that he was simply “shooting fish in a barrel” and that I could query this with my care co-ordinator at the ED service at my appointment last Friday, but I didn’t like the fact he even brought it up. Anyone who has experience with eating disorders know that this kind of thing can be a trigger, and that’s the last thing I need when things are as bad as they are at the moment.
My appointment at the eating disorders clinic didn’t go as my care co-ordinator was obviously planning. I don’t think she had any intent of discussing any of this with me, indeed that was what she intimated as soon as I queried what had been mentioned in my appointment with the psychiatrist. She confirmed everything he had said and then detailed my options. I was horrified. They are indeed looking to give me a ‘therapeutic break’ from treatment (temporary discharge, let’s not dress this up) unless I took the only option open to me. This option, in reality, isn’t one…not for where I’m at.
Gloucestershire Eating Disorders Service is one of only a few in the country that offers a day treatment programme. Just after my diagnosis of anorexia I was referred onto this programme but was discharged from it after just one week. The programme is meant to last eight weeks. They have very strict guidelines, one of which is that all meals are completed within a set amount of time. These rules are there to ensure that you are committed to the programme, your recovery, and to protect the recovery of the other patients. I understand the rules, I accept them but at the same time I understand that if you can’t stick to them you can’t stay. I also acknowledge that if you can’t adhere to them that you aren’t well enough for the programme, and that your illness is more severe than that programme can accommodate. If that’s the case then other treatment MUST be instigated, simply leaving someone to fend for themselves should NEVER be the way.
My care co-ordinator says this is the only option open to me at this time. If the programme wasn’t right for me at the start of my diagnosis there is NO way it is right for me now, not when my illness is so much more progressed, my behaviours are far worse, my weight so much lower and my food fears so much more profound. I know exactly what is expected of me there and should I accept a place I am certain that I would be discharged very early on. The net result of that would be damaging in the extreme and that’s something I am simply not prepared to face. Things are bad enough as they are, why would I do it? This, to anyone reading who has no experience or understanding of eating disorders, must seem ridiculously defeatist. I am being nothing more than brutally honest with myself and what I know of where I am. With all the will in the world and desire to gain control over this BASTARD of an illness it has me on the ropes. Even if, hypothetically, I went and did the programme I would still spend 20 hours a day at home. That’s a lot of time at the mercy of all that goes on in my head, not being supervised through meal times, not being stopped from carrying through on behaviours that might undo anything I might do in day treatment. It’s all that happened before.
Our conversation then progressed and she posed the question of in-patient treatment again. I had been thinking about this as an offshoot of my psychiatrist appointment. He had asked me if I thought I would benefit and although I’d been resistant to this point I have become so desperate to regain some life back and some control that I realised that this might actually be the best way forward. I began to get tearful for the first time in a long time and nodded in agreement. I wish she hadn’t asked the question. It would seem that the NHS Commissioners will not sanction inpatient treatment for me again, especially in view of day care treatment being an option. Given the reasons I have gone over above this leaves me in the wilderness. Day care treatment would be, I believe, catastrophic and inpatient treatment isn’t allowed. I don’t blame the NHS for this, nor my care team really – this sounds like a funding issue and isn’t the first time I’ve been in this position. You have to admire our government don’t you? Oh no, you don’t!!!
So here I am. The wilderness. The eating disorders service haven’t formally put me on a ‘therapeutic break’ yet, they want to have a meeting with me and the recovery team, alongside my GP, and then they will. It’s here that I have to tell them my decision in regard to day treatment, but, in truth, I see no real prospect of me engaging with that for all the reasons I’ve said. Meanwhile I am physically getting worse as the anorexia has a field day with my vulnerable state. Even at that appointment with my ED care co-ordinator my weight had dropped and has continued to do so, not because I’m proving any point, but because I am that ill. And the worst thing? I’m still not 100% sure these professionals completely listen to me. Yes, I’ve always had mental health issues. Yes, I’ve always had food issues but just today I had a letter from my psychiatrist following up on our meeting suggesting that maybe all of this might just link back to my being on the autistic spectrum. It’s at times like this I am really at my most vulnerable, when I can’t see any way out. My sole issue right now, or rather my primary issue, is that of my eating disorder. I need help with that and that alone. If I can’t get it I have no future, it’s as black & white as that. Yet here I am facing the prospect of losing the support of both the ED and recovery teams.
I’m trapped. I feel like I’m staring down the barrel of a gun. I’m looking for a future that doesn’t seem to exist and all the while this pig of an illness is mocking me, making me scared and won’t let go.
My blog, as relatively new as it is, has always been about what it’s like to be a 42 year old man living with two debilitating mental illnesses in order to express and educate. Today I am blogging as a one off, to write an open letter to you, Hayley Williams of Paramore. It’s to thank you for giving me an experience last night that was most certainly needed, definitely a reminder of what matters to me and, for one evening, took me away from all that binds me the rest of the time. All I’m about to say is still relevant to my blog, to my conditions, but both thanks you for your role in giving me a reminder of what matters to me most in my life and a feeling that I have long forgotten.
Anyone that’s been here before will know this but as this is specifically to you, Hayley, I have anorexia and was recently also diagnosed with Asperger’s. Life is confusing for me and living with an eating disorder is really tough, especially as I am already obsessed by routine and order. Anxiety features highly in my life, so to come to a gig of any size at the moment, even incredibly small pub gigs, is something of an achievement. To come to one of the size of last night has been nigh on impossible for the past couple of years.
When the tickets went on sale for Paramore’s tour I was actually in an eating disorders hospital and I completely ruled out any chance that I would be well enough to come. Even up until a few days ago I was adamant I couldn’t do it. The routines of my eating disorders behaviours, the fear of people, crowds, large open spaces – it was all too much. But reading reviews of the Dublin, Manchester and London shows was pulling at my desire to come and see you. I knew the tickets were like gold dust but as I started to look I happened upon a tweet from someone who had one available and took it. Factually this all sounds great and calculated. It wasn’t that easy. The past few days I have swung between “I can do this” to “what am I thinking? This is stupid, you are setting yourself up for more failure and regret!” You see, this is what happens. I want to do these things but the collaborative forces of both illnesses set me up for a fall on the majority of occasions and, as a result, the majority of the time I stay home, stay in my driven routines and don’t engage the things I used to love. And if I do try? I usually fail.
But I made it. Through the heat (my word, how hot was it?!), through the fear, through the tears (yes, lots), through the shakes, I came. I’d had to ‘pay the piper’ though. I couldn’t stick to routine (I have to be coy here and protect the sensitivities of anyone struggling and not go into details of my behaviours) and in doing that I was in a pretty weakened state. But I was there on the balcony. I didn’t kick anorexia for the evening, it still was in control because I had to make compensations, but I kicked my anxiety and I did it with YOUR help. Paramore’s music, my love of it, and specifically your lyrics were enough to drive me on. At the start of the set I was still a knotted up excuse of humanity, tense, hunched up, nervous. But you changed it…
I allowed the music & performance in, or rather you forced it into me. You see, that’s your power Hayley. What you do up there is more than just perform, you deliver something into people’s lives, you enrich, you bring joy and energy and you do it all without any pretence. The way you write is from experience, it’s from within. You aren’t “painting by numbers”, you’re actually telling things as they are and that matters a whole lot because it connects. Last night I got lost in the music in a very literal and real way. For large parts of the gig I forgot about my illnesses, I forgot about my problems or, indeed, the problems of the world. I was immersed in all I loved. Music, Paramore. It was the energy I needed right there, right then. I was totally at one with Paramore and the sounds coming from the stage and it was my life source, your words my inspiration, as were the things you said between the tracks. As the show ended I actually said “no, please don’t go, not now.” I didn’t want that feeling to end, I didn’t want the reality of life to come back, because it felt SO good.
Reality. Did last night heal me? No. What it did was remind me that music can give me time out from what destroys me the vast majority of the time. Even if I have to adjust behaviours slightly and go through a whole lot of anxiety to be there it CAN be worth it to experience those sensations you gave me. Again, does this set a new trend and will I be able to do it every time? No, but maybe I’ll be able to do it more often than only 1% of the time now.
Hayley, you didn’t know that you would have this impact on someone last night I’m sure, and maybe you hear stuff like this all the time. Maybe it’s not that big a deal…but to me it matters. You helped give me an escape last night, a reminder that sometimes I don’t have to be cowed by anorexia and Asperger’s 24/7. As I say, I’m not going to be healed by it, but the soothing power of music will forever be a comfort and you definitely reminded me of that. I’ll forever love you for that, I’ll forever love Paramore for that, and I’ll forever love you for writing the songs you do. Don’t ever stop doing it. You matter, more than you will ever realise. X
Blogging. It’s not just for story telling right? It can be therapeutic I’ve been told. This isn’t going to be therapeutic, I know this already. Why am I doing this? I think, as I sit here and write this, I’m again communicating what it’s like to live with two powerful mental health conditions and what it’s like when they collide. Believe me, today they’ve had a head on collision. They sped up, hit full speed and collided with me in the middle. And now I’m suffering.
I put myself in a bubble most of the time. I know how I am and how to be in order to have as peaceful time as I can living with both anorexia & Asperger’s. There are certain situations I avoid, as much as I don’t want to. They can be engaging in things I used to love, and given a chance would still love, or doing things everyone else does that are part and parcel of life. Very recently, I dipped my toe into such a situation, one that I deliberately had avoided, and now I am paying. I won’t say exactly what it is, and I’m sorry to the one person that will know what I am talking about – but suffice to say that it’s one of those things that people do that can so often lead to so much happiness. For me I know it’s tricky, especially from the perspective of Asperger’s and would definitely need understanding & patience with my eating disorder. I let my guard down. I believed that, maybe, I could have a piece of the normal world again. The combined forces of the two A’s had a different plan.
The horrible thing when all this happens is that any control is lost, and I’ve lost it. Suddenly some infrequent behaviours creep back in and I can’t stop them. Of the ones I will allow myself to mention self harming is probably the worst and most upsetting. It’s never severe, but visible enough to remind me that the control has gone, and just this afternoon it happened. I hate it, those compulsions so incredibly strong that no amount of “me” can stop it. It takes me down all kinds of dark paths, and I go over and over how I even got to that point. It’s like the combination of the two conditions are mocking me, reminding me that I can’t or don’t deserve to have any semblance of normality, happiness or enjoyment in life. And then I start asking what I am actually living for, what is the actual point. Don’t be alarmed, I’m not “there” at the moment. But that I even get to the point of questioning means I know I am in a spin. And the eating disorder behaviours are at their worst right now, the very worst. Don’t sit there thinking I’m in a mind of “woe is me” – I’m in a mind-set of “I’m sick of these fucking illnesses, but what the hell do I do?”
The irony of all this is that were it not for the fact I live with these things I could be blogging a very different tale and my life could actually be heading for the kind of utopic bliss I dream of constantly. This is my reality: I can’t have that, and no fight can change it, at least not as ill as I am now. Still, the sun is shining and it’s warm. I HAVE to leave on a positive.
I took this picture early one morning whilst accompanying my brother on a fishing trip. It was extremely cold that morning and, as anyone who is underweight will tell you, when it’s cold you feel it a lot more than anyone else. It’s almost like the cold is literally to the bone. Anorexics are actually at a much greater risk of things like hypothermia than most, something I would have done well to remember that day. The image is significant, it captures something that I will try and explain in this blog post that I find it hard to convey and often want to. It’s something I feel almost like I shouldn’t say, especially when people are being kind, trying to encourage me to be positive, but as someone who sees things in a very black & white way I have to explain, as I also have to explain why I see the world thus.
I’ve always felt a little disconnected from the world or, rather, from people. I see how people are, how they connect, communicate and react with each other and never seem to be able to attain the same level of interaction. It has been a constant source of frustration and anguish throughout my life, often seeing me withdraw from society. In my childhood teachers would often remark to my mum at parent evenings that at break times I would prefer to sit under trees making daisy chains in a neat uniform manner than interact and play with the other children. There are two things to comment on here. Firstly, I am a creature of habit and order. I like things to be “just so”, to be in order, to be lined up. I hate being late for things, I get unsettled if things aren’t to plan, I make lists, if something is out of place I have to put it right. I’ve always believed I had traits of OCD, however during my adulthood through various issues with mental health and certainly with my battles with anorexia, I have come under closer observation by psychiatric professionals. As I’ve touched on in a previous blog I have had initial assessments for autistic spectrum disorders and it is widely accepted that I have Asperger’s Syndrome. It was quite liberating to find this out. No longer did I feel “odd”, like an outsider, the kid who was weird and deserved to be the butt of every bully’s joke. I’m just wired a little differently to most people and there’s nothing wrong with that – I just see things a little different to the majority, I react in a different way and you know what, that’s totally fine. I can live with that. If I need to line things up, if I have to arrive early somewhere and sit in the car for 30 minutes just to be sure I’ll be on time, if I have to withdraw from society for a bit, if I need to shut up for fear of not saying things correctly – it’s OK!! I am who I am. Being on the spectrum doesn’t make someone a freak, it makes them unique. Celebrate it.
I’ve gone off at a tangent – another trait. The other night I went out to a gig. It’s a rare thing, such is my heightened state of anxiety day to day, both as part of my general state of mental health currently and anorexia. I find it hard to be amongst any number of people, especially people I don’t know, and only really feel comfortable with very close family. In order for me to go to this gig I needed to invite my mum & stepdad, had they not come there’s no way I would have gone. It was a big deal to go, even with mum there I was still having doubts up until the last minute and at the end of the evening there was a point where I knew I’d reached my “point” and needed to leave without being able to say goodbye to Emi, the girl whose gig it was that I’d gone to. I hate that, I hate not being able to finish things properly.
At the end of the evening I did, as so many people do, and posted pictures and a status on social media about the gig. I understand fully, and TOTALLY appreciate that people are encouraging, supportive, well meaning and good and I really love them for it. I thank them for it too, 100%. However, there’s something I need to explain, because sometimes I come across as very negative when people are being positive and it’s because I can’t convey what the truth is versus what they might see. Social media can be a shallow form of reality. People can sometimes be whatever they choose to be there, create a persona or a life that isn’t representative of reality. I try not to do that but I think sometimes that things get lost in translation and people assume that because I might be out at something social, or that I’m taking pictures of somewhere that isn’t at home, or that because I’m baking a cake that maybe I’m doing ok or things are improving. The truth is very different. Ok, I acknowledge that going to the gig was a good thing, that actually getting out was positive, but it doesn’t mean that I am suddenly getting better. Positive comments can sometimes be seized on by anorexia and be used against me. This can be the internal dialogue:
“So, they think that because you were out you are improving. I told you that it was a mistake. You can’t get away with this sort of thing. You’re clearly not ill enough. Stay in, eat less, exercise more, do more of the things you know you shouldn’t but you know you must to keep things quiet…”
It’s unrelenting. Someone took a picture of me at that gig and shared it out. I’m smiling in the picture (my best fake smile) but I don’t look particularly healthy. Again, anorexia loved that. The inner voice of the illness was making all the right noises, glad almost that the picture was out there and reassuring me that anyone that could see it would see that things weren’t actually ok…because they most certainly aren’t. How rubbish is that? I should be able to go out, enjoy something and look forward to doing it again without all this. Instead I actually go through this process every time and it’s a long time before I do anything again because it’s so wearing. The times I fight back and try again too soon have shown that things just get worse and worse so it’s easier to just wait, but it’s a nightmare.
The point of what I’m saying is this: if I reply to your positivity and it seems I’m trying to play it down I sincerely apologise. It’s not that I’m ungrateful, quite the opposite, I love you for it. However, I’m sorry to say that things aren’t ok really. I’m glad I got out but it’s been painful, and it’s more painful now. Celebrate with me for the fact I went, that’s a great thing, but I’m sorry to say that we’re not going forward here. I want so badly to pretend otherwise but I can’t live that fantasy life, I only do black & white. Please don’t hate me for this, know that I love you for your support and please, celebrate with me that, for this time and the next, for those moments I am enduring pain to just break free of what my illness wants.
There’s a beautiful sunrise behind those twisted branches. One day those branches will be ordered in a way that I can see more of the sunrise. I hold on to that.
This picture was taken whilst I was resident at my first inpatient admission at a unit in Norwich. It was part of a therapy task to depict how we were feeling about our illness at the time. I’d just purchased my camera so I was trying out different techniques and captured this. It summed up how I was feeling then and have felt since. The hair band that I’d borrowed from one of the other patients I used to hold my thumb and little finger in place, restricting the movement of my whole hand, not allowing it to be free to do as I would naturally want it to. That’s symbolic of anorexia. Food, in reality, still holds all the appeal that it always did before the illness took hold (if you allow logic to flow) and when you’re weak, struggling to function both mentally and physically in every conceivable way, you know it’s the only medicine you need. Yet anorexia stops you. It’s your Berlin wall, it has a gun to your head, it’s the ultimate fear inside. It makes you believe that food is the ultimate poison and that you must NOT eat, that it will be your undoing and that no good can come from it. It’s all lies of course, logic allows me to be certain of that, but remember this is a mental illness. A broken leg can be legitimized by the fact it can be seen on an x-ray. Just because anorexia is mental doesn’t make it any less real or controllable and no amount of logic can stop it.
That’s what makes all this so hard, that’s what makes certain attitudes so upsetting, scarring or just downright aggravating. Sorry to go back to her, (I won’t do it again), but that’s what upset me so much about Katie Hopkins at the time. It wasn’t just the lack of empathy she showed, nor the fact that she was protecting “brand Hopkins”, it was the fact that actually her public attitude towards mental health must have been her real one. The “get a grip” attitude. Would you tell someone with that broken leg to take their cast off, chuck the crutches away and go for a run? Nah, neither would I. Anyway, KH embargo from here on in.
After receiving the diagnosis things both became very real and very serious very quickly. I was immediately signed off from work both at the insistence of my care team and my employers. My boss, to be fair to him, had been very concerned for some time and was constantly nagging me over my ‘behaviours’ for quite a while. I kept laughing his concerns off but he wasn’t stupid and he wasn’t surprised when the truth came out. I was referred onto a day treatment programme at the eating disorders unit in the town I was living in at the time and it was there that I really began to understand just how unwell I was. Again, without saying things that might be triggering, I didn’t deal the programme at all, such was the intensity of the compulsions within me, such was the grip that anorexia had over me already. I was due to be engaged there for a period of 8 weeks but I failed to stick to the guidelines (which were in place both to help begin a pathway to recovery and to protect the recovery of other patients on the programme) and was discharged after a week. It felt like I was in crisis at that point. If I couldn’t follow the treatment offered there what would happen next? I knew I couldn’t do it on my own and with nobody at home to help keep me safe I began to fear everything and anything.
My care team called me back to the unit to tell me that they were now searching for an inpatient unit urgently and, two weeks later I was admitted to that unit I mentioned in Norwich. It was here that I TRULY experienced what anorexia is capable of. From day one you are confronted with your greatest fear and not given options. That word, “medicine”, is quoted time and time again. You are reminded why you are there over and over but with compassion and understanding. Care workers sit with you, holding your hand whilst you do what to anyone else is the most natural and rudimentary thing in the world: eat a meal. You cry, you scream, you’re sad, you’re angry. You throw things, you hit out. At times you become like a crazy person. You are anything but you. Imagine this: take your greatest fear. It might be spiders, it might be clowns, it might be heights, it might be staring down the barrel of a gun even (yes, I’m not exaggerating). Now, imagine having to confront it SIX times a day ,without choice, because the only way to deal with it is to do just that, confront it. And all the time you are confronting it the same level of fear that you always feel in that situation is there. Now magnify that fear by 100. No, you’re still not close. Now imagine you would do anything you could to get away from that situation yet you know the only way to get over it is to stay, however there’s a voice in your head telling you to get away. Now take that thought and multiply it by 100 again. Still not close. I’m trying to describe it yet somehow it’s still understated. It’s hell.
I spent 17 weeks in Norwich before I was discharged. It was useful in that I gained a greater understanding about the illness and how/why I became ill. I also became a lot more aware of how hard it was to overcome and, unfortunately, I left no better than when I went in. Physically yes, I was much improved, albeit actually lighter, but my vitals were improved and my cognitive functions were a lot better. Anorexia, however, was still ruling my life and it wasn’t long before all the behaviours that I was displaying before I went there were part and parcel of life – only this time they were worse. It’s almost like I was being punished for attempting to fight back, yet another symptom of this vile condition. Within a few short weeks the care team back in my home town had decided that I needed to be back in inpatient care as both the physical and mental effects took a firm grip on me and a bed was sought.
It took 4 months to find a bed. During that time I really did get very, very ill. The physical effects of a mental illness like this can’t be underestimated. Anorexia is a killer, the biggest killer of any mental health illness there is. I know, logically, that it has the potential to kill me at any point, despite the fact that it tries to convince me otherwise. Again, you might be reading this thinking “he’s writing this and he knows it, why can’t he just stop?!” Keyword: illness. Why did it take so long? Many units just don’t have beds for men. Of the units that do they usually only have one and if that bed is empty and they’re at capacity and a female needs admitting she will be given it. I have no issue with that, I would NEVER begrudge anyone a place, especially as I know what it’s like to be waiting and, obviously, to suffer this bastard of an illness. Clearly, however, provision for male eating disorders patients is inadequate in this country, especially in view of the fact that the prevalence amongst men is on this increase. I’ve been quite vocal about this and have appeared in both the national and local press and TV.
My second inpatient admission lasted only 6 weeks and was very much designed as an intervention to my symptoms. It would have been 8 weeks but, sadly, my much loved grandfather died whilst I was there and I didn’t feel able to stay. The interruption to the symptoms lasted as long as my stay, however the behaviours started again once discharged, tempered somewhat by my understandable grief for a man who meant the absolute world to me.
So where am I at now? I think the best way to describe it is that I am living in the world with anorexia leading me by the hand. What a horrible thing to type, but that’s how it is. After being unable to work for so long my contract was finally terminated last November. Every day now is purely functional. I try and do what I need to do to survive and that’s as much as I can do. I have little energy and anorexia has me at its mercy. Do I want this? Not one bit. Do I want to fight? I fight daily just to live, but I want SO much more. In my previous blogs I talked about some of the things that I loved in my life. None of those things are there anymore; I want them back. But for now I don’t have the resources within nor the answers to find my way to control this. Things are in transition. I’ve just moved to be nearer to my mum as I’ve previously said, so my mental health care team is changing. My eating disorders care team are waiting for that to happen so that everyone can get together and work out where we go from here. I feel like I am in limbo and whilst I am the monster, anorexia, is happily doing its thing. It’s easier to let it for now, it’s almost like allowing it for the quiet life. Wow, how rubbish is that? But it won’t always be this way. Let’s see what future blogs bring.
Blogs to come will be updates about how I am, but also be about things I might read and want to talk about and to do with other mental health issues. Asperger’s and borderline personality disorder are two considerations in my make up and I’m being screened for both. As those are explored I’ll talk more about it.
Finally, thank you to everyone who has been so kind about the blog launch so far. I was nervous about doing this; you guys have made me feel a whole lot better about what I’m doing x