Dear Mr Prime Minister

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Dear Mr Prime Minister,

Today, for the first time in my adult life, I voted in a UK General Election. I walked into that polling station seething from yet another pointless session at my local mental health centre. Neither I nor the consulting psychiatrist quite knew why I was there. She was replacing my previous consultant and this was an appointment scheduled by him some time ago; I was under the impression that today I would be beginning a much awaited course of OCD focused psychotherapy. Turns out that it was just a brief review session to see if I was getting on okay with my latest medication combo. The psychotherapy is, apparently, still pending. You see, despite being referred formally for specialised psychotherapy in March, I am yet to receive any confirmation from the designated psychotherapy team. Apparently they were supposed to have sent me a questionnaire weeks ago to kick things off. Nope. So I’m told to book another appointment for three months’ time, hopefully by then we will have heard back from the psych team. Yay.

To put this into a little bit of perspective.

I was first diagnosed with OCD over five years ago – shortly before we saw the dawn of the most recent incarnation of what one might call a government back in 2010. I was diagnosed in early spring, put on medication a week later and then, one month after beginning the meds, underwent a brief telephone assessment which, as far as I could tell, was designed to assess the likelihood of my committing suicide. With the suicide risk formally assessed, I was told I would be put on the waiting list to see a CBT therapist; I might have to wait a few months as there was a bit of a backlog, but I was on the list. A few months seemed liked a forever at that point in time but, I understood that when demand is high and funds are tight, waiting lists are inevitable. To be on the list, any list, was a relief.

It took eighteen months, and much chasing, before I was finally sitting in front of a CBT therapist. Turns out, my therapist didn’t really have what I would call a good grasp of Obsessive Compulsive Disorder. Or maybe he did, and I just didn’t get it. Either way, with his broader ‘let’s just try and make you less anxious’ approach, it wasn’t long before my confidence in the process started to wean. It evaporated completely the day that he said this:

“An HIV positive person could spit in your mouth and you would not catch HIV”.

Not helpful. At all. Firstly, I know this, this is not brand new information. Secondly, this does not ease the anxiety of an OCD freakout. Thirdly, how the hell is this supposed to help me walk to work without obsessing about every speck of reddish brown that happens to be on the floor? To be fair, he thought he was helping, but he wasn’t. In that single sentence I knew that he just did not understand and could not help me in the long term. The trust was gone. After a particularly emotive session which ended with my walking out long before my hour was up, we decided that I should see a different therapist.

After a year or so of yet more chasing, in July 2012 I was introduced to the next therapist. This person was fantastic, she had a clear treatment plan and set clear objectives that I would be expected to meet throughout the 12 weeks of treatment (one hour per week for 12 weeks was the standard at the time). There were a number of strategies that my therapist used that proved to be quite useful and, surprisingly, very good at challenging both the obsessions and the compulsions (Exposure Response Prevention, or ERP was particularly helpful). It was a difficult and emotional process but, by the time week 12 came around, I felt more positive about my life and my mind. OCD was still very much there but the sting of the freakouts did not cut quite as deep, and did not last as long. For me, this was amazing. Still, as I walked out of the final session there was a pang of sadness, a shadow of fear that somehow the OCD monster would creep back into the room. Unfortunately, without going to see someone privately (which I could not afford), I was pretty much out of options, nothing left but to go it alone, and hope for the best.

Two or so years later (June 2014) and I found myself at my local GP surgery, sobbing, terrified and begging for help. I didn’t want to be on the earth anymore, I couldn’t face the waking hours, I hated the thought of living with this thing for the rest of my life. I was making myself, and the people around me, miserable. My GP upped my OCD meds back up to the maximum dose (we had agreed that I was ready to move to a lower dose six months earlier) and signed me off work. She referred me to a local talk therapy service for CBT therapy and also fired off a request for advice from a consulting psychiatric team. They told the GP to put me on a new type of medication, in addition to the one I was on, a medication that was so strong that it would first require a kidney function test. This, without having even met me. They tell my GP that, if the new medication doesn’t work, she should write back and they’ll reconsider my options. I researched the drug online and also wrote to an expert in the area of OCD. Nothing I read suggested that this was a standard medication of choice for OCD, but rather a drug for Generalised Anxiety Disorder. The expert himself expressed surprise that I would be prescribed this drug. After much thought I decided against the blind prescription. My GP wrote back to the mental health team.

In August 2014 I started my second round of CBT therapy. In the first session I answered some questions about my general mental health and levels of anxiety and I also completed an OCD ‘test’ (i.e. to determine the severity of my own particular brand). After completing said test, the therapist confessed that he didn’t think he would be able to do much about my OCD as it was too severe and he didn’t think himself entirely qualified. So instead he suggested that we work on helping me feel less depressed. Needless to say, I wasn’t much impressed, given that the main reason I feel depressed is because of the OCD. But hey, the dude’s a pro, I will trust his professional judgement. Some weeks later and the words ‘bulimia’ and ‘body dysmorphia’ are peppering the air like tickertape; I must admit that I began to forget that the whole purpose of this treatment course was to help me deal with the OCD. Somehow, this had been swept to one side, in favour of discussions about food addiction and fat. By the end of the treatment (8 weeks initially, then increased to 10 for good behaviour – no, seriously), once again I found myself wondering why it was so difficult for me to speak to someone who actually had experience of treating someone with Obsessive Compulsive Disorder. Was this why I paid my taxes? To play musical chairs around the broken infrastructures of the NHS?

Early September 2014 and I go back to my GP to see about the referral to the psych team. She asked me again if I would consider taking the medication. I said no. She said she would see what was happening with the referral. I finally get a letter telling me that I would have an appointment in nine weeks’ time. Just nine weeks! Because, you know, nine weeks just fly the fuck by when you feel like you’re going crazy and you just want someone to help you. I attend the appointment and complete yet another anxiety themed questionnaire to assess my suicide risk. I am told that medication is the way forward at this point in time, but they’ll have to check with my doctor. Okay. They tell me that I will probably need to be referred for psychotherapy, but that they will have to talk to my CBT therapist first to get the okay from him to refer me; you know, the same CBT therapist who said he couldn’t help my OCD because it was too severe. Makes sense, right?

Long story short, it’s 7th May 2015 and I am STILL waiting to see a psychotherapist. Five years after my initial diagnosis. In that time I have been on the highest dose of medication for OCD; have swallowed approximately 6,000+ pills in a bid to stay this illness; I have completed Christ knows how many anxiety/suicide questionnaires; I have seen three CBT counsellors; I have been told off by a GP for wasting her time because I wasn’t suicidal; I have been signed off work for a total of five months; I have been told that I don’t understand my own illness by a mental health professional; I have been fobbed off time and time again; I have wanted to die.

I have wanted to die.

And I am in no way the only one. There are millions of us who are forced to live in this universe called Anxiety. Living in fear, all day, every damn day. Afraid to get out of bed, afraid to go to school, afraid to go to work, afraid to live their lives. Their fears are all-consuming, terrifying and real. They live in a world that stigmatises their reality, a world that struggles to comprehend mental illness for what it is – a 24 hr prison cell, a 24 hr tip-toe around the sleeping monster within. No breaks, no sleep, terror is hiding everywhere. For so many people in this country, it seems like there is no way out.

And that’s the kicker. That’s the thing that Cameron & Co. just don’t seem to have understood. Ever. The worst outcome of untreated mental illness is not ‘x number of hours lost in sickness absence per year’; or ‘sum x of UK taxpayers’ money spent on Statutory Sick Pay’ – or however else they choose to measure it. The worst outcome of an untreated mental illness is death. People die every day from a mental illness, from a disease of the mind. Is that really so difficult to understand? Hearts stop every day because their owners cannot live with their own minds. Life wasted, because somehow they got lost in a system that is itself the bloated product of profound mismanagement and a serious lack of organisation at the most local levels.

This is an organisation that has the very best of staff having to make do with the worst of foresight from one government after another. They are overworked and underpaid, underfunded and yet, somehow, also under resourced. Tell me again how this most recent government has given a damn about mental health? Tell me again how they’re going to do things differently next time? Only don’t tell me that the answer is in cutting funds, because anyone can see that any cut to funds at this point in time will result in more people like me, depressed, isolated and waiting five years (and counting) for help. The answer lies in changing outdated attitudes to mental health. It lies in seeing the NHS for what it once was and what it could be: our most vital asset. Save it, reform it, do not abandon it. To abandon it would be to abandon millions.

So, Mr Prime Minister, it’s up to you. Will you help me? Will you help the millions like me?

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The First Psych Consult

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So I had my first psych consult.

My appointment was scheduled at 9am with a Dr Smith* (*not his real name). At 9.10am I was called by a Dr Jones* (*also, not his real name), a young doctor who looked fresh out of whichever medical training he had recently completed – he didn’t look much older than me. I wondered if he was perhaps a nurse who would be giving me a preliminary consultation, before seeing the Doctor himself. No, Dr Jones would be seeing me; he explained that he was part of Dr Smith’s team and so it was essentially all the same thing. Funny, I thought I had an appointment with Dr Smith. Perhaps he has a more important case to attend to. I have to be honest, I wasn’t convinced by the swap and, as much as I am ashamed to think that I pre-judged him based on his age alone, it’s true. It is very unfair I know but, when it’s your health at stake, you want to be reassured by an experienced pro who has seen so many cases that s/he is absolutely certain that s/he will be able to cure me, because, by now, it’s just part of the day job. But, at this point, I am grateful for anyone and, as my Dad pointed out to me later, I could have had an older doctor that knew nothing. Plus, Dr Jones is very nice, and listens intently to everything I am saying, repeating what he is picking up as I go along. It’s reassuring that what he is reflecting back to me is pretty accurate, I am grateful for his attention to detail.

So begins a rather humiliating questionnaire that goes into every possible detail of my existence, right down to the fact that I was delivered by caesarean section, that I was jaundiced as a baby and had a squint correction at two years old. Struggling to see what any of this is going to do to help them understand my OCD, but they are the pros, wearing the metaphorical white coat. Dr Jones asks me to go into the details of the OCD manifestations that I had during childhood, and they all come flooding back, like the most unwanted guest at the shittest house party. And so I remember the hours spent tapping, counting, switching lights on and off, retracing steps, saying prayers in my head over and over again, all so that my parents wouldn’t die. I was convinced that, if they did not do any of these things, they would die. The religion that was so often my comfort could also be my enemy – I was scared of God, of what God would do if I was in any way a bad person. Surely, the first thing would be to kill my parents. I feared for their lives. I remember once when I was very small, my Mum had a bad throat and coughed up a small amount of blood, I thought she would die. One of the most vivid nightmares I have ever had was one where my Dad died. He was away for work at the time and I had to go and sleep with my Mum in her bed. I was obsessed with doing everything I could – via magical thinking and ridiculous rituals – to keep my family safe. Of course, none of this does keep them safe, but it’s a risk I was never able to take. When you are that small, and genuinely afraid that your actions will kill your parents, there is a terror that you cannot shake. And it’s not something I could tell my parents, because then they would know I was a bad person. See how it gets you, with its vicious little claws. It’s a knife to your throat and a gun to your head, choose. Looking back now, if I could say anything to my nine year old self it would be to tell them. Tell them everything. You won’t be told off. They won’t be angry. You are not a bad person, and they will not love you any less. But I’m 31 – it’s easy to say that now. Back then, most people didn’t know what OCD was, not really.

Once the in-depth questionnaire was over, Dr Jones called in the aforementioned Dr Smith, who I learn is the consultant psychiatrist. I must admit it felt like the sole focus of the session became about trying to convince me to take yet more medicine. I have been on the same medicine – at the highest dose – for four and a half years. In general I have found that the medicine helps to take the ‘sting’ out of OCD freakouts. They are still there, but the physical ache that often accompanies them occurs less frequently, and the mind fever is ever so slightly less intense. They have helped me a great deal and have kept me afloat. I would still like to be free of them one day. When I went to the doctor a few months ago she attempted to refer me to the psychiatric care straight away. She was told to prescribe me with an additional drug (which I won’t name) to the one I was already taking and, if that did not work, the psychiatric team would consider consulting with me. My doctor admitted that she had never come across this particular drug being used for OCD, but she advised that I try it anyway because, after all, she is not an OCD specialist. I, however, objected to the idea of taking another medicine: having spent the best part of four years wanting to come off the medication (and its accompanying side effects) that I am on, I certainly didn’t relish the idea of swapping my daily shot of my medicine straight up into a medicine cocktail du jour. I took the prescription that my doctor printed anyway and bought the medicine. It is still sitting on top of my bookshelf.

I could not bring myself to take the medicine. I had read the papersheet of doom and, of course, it made for shit reading, they always do. I researched the drug and its use for the treatment of OCD: I was surprised to learn that there was very little out there to suggest that it was regularly prescribed to treat the mind demon at all. It didn’t appear on a single list that I found of drugs used for standard and specialised OCD treatment. I wrote to an OCD specialist in London, he expressed surprise at my being prescribed the drug, explaining that it was usually used for generalised anxiety disorder, as opposed to OCD specifically. With all of this in mind, and not wanting to take a drug recommended to me by a complete stranger who had never met me – besides which, how do they know that prolonged use of all of these chemicals is not going to kill me anyway – I decided to hold out on the drug front. And I felt like a naughty schoolgirl for doing so. So I did not relish being, once again, in a situation where I felt the need to fight to not have to rely on pills to fix me. All I want is a professional to talk to, someone who knows this illness and who really understands it.

When Dr Jones asked me what I wanted from the psychiatry sessions, I gave the simplest – and I would have thought, most obvious – answer that I could: I want you to cure this OCD. I do not want this demon in my head anymore. He seemed surprised by my answer.

They told me they would consult with my CBT therapist (who has been treating me for depression) before switching my medication, that they would let my GP know when to switch over the medicines and that they would give me a call to confirm all of these conversations that would be had about me, but not involving me. Maybe I would be referred for specialist psychotherapy, but it was all a bit hazy and ill-defined. They said they would have a follow up meeting with me in two months. I must confess that, at that point, you do start to wonder if you are the only person in this room who is crazy, because to ask someone who spends most days climbing the walls of her own mind to wait yet another two months for help, seems a bit cruel and more than a little bit like a fist in the face. I questioned the two month waiting period (which would bring the grand total since initial referral to seven months) and Dr Jones tried to reassure me that hopefully it wouldn’t be that long and that he would try to get the ball moving. I thanked him and, despite my disappointment, was grateful to him for understanding. Looking back, I recognise that, as much as I am at the mercy of this system, so are they. They are doing the best that they can with the limited resources that have been permitted to them by the palace of Westminster, one hundred and thirty miles away. That’s because the government, in all of its infinite and boundless wisdom, has decided that mental health just doesn’t really matter.

All in all, I left my first consult wondering what the hell had just happened. I cried all the way to work, wondering what on earth was the point in anything.

Coming out of the OCD closet

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One of the worst things about any kind of mental illness is that it doesn’t just bring you down, it can also bring down the people that you love. Every behaviour, every ritual, every oddity hovers suspended in mid-air; a musty, misty, rusty smell. Like a diseased rising damp, it creeps into the cracks, saturates the walls, leaving its grim and grey shadow everywhere. You don’t have to acknowledge it to know that it’s there. It’s in the air. With contamination OCD your home can become your own little playground of terror, your personal private hub of crazy. Zones are designated as ‘clean’ and ‘contaminated’; safe spaces gradually become smaller until, if you are lucky, you have just one small patch of ‘clean’ space within which you can live. Mine was my bed. But even that had areas of contamination on it, so that I would have to sleep in a certain position to avoid catching AIDS. That’s right. AIDS.

 For years, I had convinced myself that I was doing all of this beneath some kind of cloak of invisibility, where my parents couldn’t see. I was embarrassed and I was ashamed. I was not stupid, but I felt like a fool who had been tricked, and the last thing I wanted was for my parents to realise that I had been duped in this way. Looking back, I know they must have noticed a lot more than I realised. I cannot begin to imagine how hard it was for them, especially for my Dad who, by the time I was diagnosed four and half years ago, was effectively my father and my mother in one. As the OCD worsened during my mid-twenties, I devised increasingly elaborate ways to disguise my rituals and compulsions. It’s fair to say that, as much as the compulsions are exhausting, trying to hide them can be just as tiring. But, for however much it was destroying me, I think it is safe to say that it was doing the same thing to my Dad, albeit beneath the surface.

 When I was growing up in the late 80s/90s, OCD was not an illness that was understood by many beyond the elite circles of psychiatry. I’d wager that for most people, OCD was an incredibly rare and disturbing condition, known for driving people to madness (cue extreme examples involving social pariahs and romantic notions of genius recluses – anyone for Howard Hughes?). So, as much as I was in the dark, so was everyone else, including my parents, and because I was too ashamed to talk to them, they could never know why I felt the need to obsessively wash my hands. I often wonder what would have happened if I had just said to them, “well, I am washing my hands because I think I have AIDS on them.” Of course, my parents would have said that I did not have AIDS on my hands – or anywhere else on my body – and that there was no risk whatsoever of my catching AIDS. But I was unable to tell them what I did not understand; my own thought process was so locked and automatic that I did not now how to even begin to explain. I did it because I just did. So much of what happens is happening inside your own skull, it just can’t be seen by anyone else; the embarrassing ritual (whatever that may be – hand washing, turning the light switch on and off a set number of times, the re-tracing of your own steps) is just the final scene of the final act of this sick play.

 I remember very vividly when my Dad came into my bedroom to talk to me. I was 26 years old. My room, to someone who was not me, was an absolute tip. There were piles of clothes everywhere, clothes in plastic bags, clothes drying on the clothes horse in the centre of my room; there was just stuff piled up everywhere.  My bed had no sheet (because there was not one clean enough) and my makeshift quilt was a limp damp blanket. I was dressed in nothing but a t shirt even though it was the middle of winter; it was the only clothing I had that was contamination free. Walking into this room you would be forgiven for thinking that you were entering the space of someone who was lazy and careless – the chaos, the holy clothes horse perched like a sacred sun in the middle of the room lovingly decorated with sopping wet clothes, the bags of shit just piled up all over the place. For me, this was all exactly as I needed it. The piles of clothes were, in fact, in very specific categories depending on pre-determined levels of contamination. The piles of stuff everywhere were carefully arranged so that I would not risk brushing past them as I tread the careful ‘clean path’ between my bed, the clothes horse and my door. It was a very specific path that I knew to be contamination free. Anything beyond it was death.

 I had spent the evening doing numerous loads of washing and my Dad had come into my room to tell me that I could not use the washing machine any more that day. I told him that I did not have any clean clothes and, if I could not use the washing machine, I would not be able to go to work tomorrow – the clothes that I had left in my wardrobe were contaminated, I could not wear them. I could see in his face that his mind was made up and I was not going to be washing any more clothes that night. He asked me about the piles of clothes all over my room, I explained that they were all in specific piles and could not be washed together. He asked me why. I was too embarrassed and too ashamed to explain the categorisation system.

 I started crying. I told him that I was sorry, that couldn’t help it, that I wasn’t doing it on purpose. I told him that I wanted to die, and that I was sorry for thinking like that, but that it was true, because I couldn’t stand it anymore. He looked at me and said that he knew I couldn’t help it, that he knew that I wasn’t doing it on purpose, but if I was not able to stop what I was doing I would have to go to hospital because he did not know what to do. It was in that moment I realised that, however scared I was, my Dad was just as scared, if not more so. I could see in his face that, however hard it was for me to sit there, feeling like the most worthless and pathetic little animal, it was just as hard for my Dad to see his child like this. And that’s the cruelty of mental illness, it doesn’t just get you, it gets the people you love most. And it got my Dad. And that made me feel so ashamed, so guilty, so sad, to know that there were two of us that were being eaten by this.

 If I live to see one hundred, I will never forget that conversation with my Dad because I think it saved my life. He was the one person I had wanted to tell, but the one person I wanted to hide it from because I didn’t want him to think any less of me. Most of all, I didn’t want him to worry and I didn’t want him to blame himself, to think that he or my mother had done something wrong. My parents had done absolutely nothing wrong and no one was to blame, we were all in the dark – myself included. Now, after years of not saying anything, of trying to hide so much of myself, finally I was outed – my OCD had well and truly peaked, and I was scared out of my fucking mind. There I was, 26 years old and unable to get dressed.

 I am grateful for everything that my Dad has done for me in my life, for everything he has done for my sisters, for everything he did for my mother, but I wonder if I will ever be as grateful to him as I was in that moment, when he said he knew I wasn’t doing it on purpose. I had convinced myself that no one would understand, and that everyone would think I was doing it deliberately, that it was an act, some sick warped bid for attention. Nothing could have been further from the truth – the energy you spend, the efforts you go to in an attempt to hide this shit is unreal. So, to know that my Dad understood that this was something I couldn’t help was everything. In that moment I felt less ashamed, less afraid and less alone, and I am so grateful to him for that.

 I begged my Dad to let me have one more shower that night. He said I could, but that I was to be in there for no longer than 20 minutes. Usually, when I had a shower, I would be in there for so long that I would genuinely lose track of time. I would sit in the bath with the shower head running for hours. I would sit daydreaming about how life would be one day when I wouldn’t have this, one day when I would be normal. All the while I would be willing time to just slow down, so that I would not have to get out of the shower and face the hell of getting dressed, of getting on with every day life. Getting out of the shower in itself was a ridiculously convoluted spectacle – I would have to step out of the bath without a single drop of water dripping from one part of my body to another. For example, if I stood up too quickly and the water dripped from my one of my arms to my legs, I would have to re-shower. You see, water that has just washed me is contaminated, which means that, should a single droplet of that contaminated water touch another part of my body, that part of me is now also contaminated and unclean (still with me…?). Often I would just stand in the bath and wait for all of the water to drop off me and/or evaporate, so that I could just step out of the bath completely dry, thus avoiding the circus. This time, instead of sitting in the bath for hours, my Dad called me after twenty minutes and said it was time to get out. As hard as it was to get out, it was a relief to know that, for once, the decision was out of my hands. I would not be in the shower for hours that night.

 The next day, having no clothes to wear to work, I lay in bed all day and listened to the radio. I didn’t dare eat anything because I was scared that I would contaminate the food in some way. So I lay in bed, listening to the chitter-chatter of talk radio, welcoming the distraction of their thought processes, for it muted my own for a while. I spent much of the day crying. I was cold, still having only the aforementioned limp blanket to cover myself, but at least I was dry; I didn’t want to leave my bed for fear of somehow contaminating myself, which would mean yet another shower. I just wanted one day without a fucking shower. In the evening, my Dad’s wife peered around my door and said she had heard what I had said to my Dad the night before. She said she would help me. She asked me if I wanted a hot chocolate, I said no. She made me one anyway. I talked to her that evening and she told me that she had suspected OCD for some time and that she had been doing some research online – she had even printed out some information sheets. She encouraged me to come down and eat dinner with her and my Dad.

 That evening, as I headed to the front door to make my almost-daily trip to Asda to buy underwear and socks (most days I would throw away the underwear I had worn, I had convinced myself that it would never be clean enough), she stopped me. She asked me where I was going. I said I was going to Asda ‘for some bits’ and she said that I was not to go if I was just going to buy underwear and socks (apparently, months of disposing underwear and socks in a bin leads to suspicion, who knew?). It’s funny, you think all of your weird behaviours and rituals go by unnoticed. They don’t. I didn’t go to Asda. That night, she brought me some sheets and a quilt and helped me make my bed. I went to sleep that night warm for the first time in weeks. It was like heaven to be that warm. Later that week, she and I would go to the doctor, who would diagnose me with OCD. She spoke for me – I was too tired – and she fought for me in a way that I could not have at that time. I will never be able to thank her enough for what she did for me.

 A few days later, my sister came round to visit me with her husband and children. I was still in bed but she came up to sit with me and talk with me. Growing up, I had shared a room with my sister and, as such, she was privy to all of my weird and whacky behaviours and habits. I was surprised to learn that she still remembered my habit of switching the light switch on and off a certain number of times, for fear that, if I didn’t, my parents would die (I had, in fact, completely forgotten about that period myself). At the time, she had accepted it all in the way that children do – as just something I did. This meant that now, some 17 years later, she could accept what was happening to me but without being afraid of it, which somehow made me feel less afraid too. Her matter-of-fact-ness was comforting. She has the blunt no nonsense streak of my mother, which means she can get away with the straight talking that I sometimes need to hear, she panders to no one and no mental illness. Make no mistake she will tell it to fuck off as quickly as she’ll tell the next poor bastard who’s pissed her off that day. I admire her so much for that. It helps to know that, if my sister has that streak, somewhere I must have it too, and perhaps every now and again I can tell OCD to go and fuck itself.

Did you hear the one about OCD?

A few weeks ago, the stationery company Paperchase thought it would be a wise idea to stock the following product in their UK stores:

OCD HAND SAN OCD HAND SAN 2

I don’t need to go into too much detail here about the spectacular levels of fuckery that Paperchase have reached with this shit. As a consumer, I am disappointed – I thought better of this quirky (albeit at times over priced) provider of notebooks, craft materials and birthday cards. As someone with OCD, I was disappointed, insulted and more than a little fucked off.

I am often left feeling more than a little frustrated when I hear the term ‘OCD’ being used as an adjective/insult/joke in every day life (hands up if you have heard a variation of this statement – ‘I am soooo OCD about….’), as if OCD can be used as a substitute for the words ‘fussy’/’perfectionist’/’neat’ etc. I was rendered all but speechless when Channel 4, in its infinite wisdom, decided to air a programme focusing on a group of individuals who seemed to present with severe forms of contamination OCD. Instead of seeking help for these people (one of whom spent up to 19 hours a day cleaning) Channel 4 instead chose to make the most of their misery by putting them to work cleaning the homes of people they did not know. I shit you not. I won’t go into detail here, but if you have five minutes, please do read Richard Howse’s review of this hideous programme here: http://www.telegraph.co.uk/culture/tvandradio/tv-and-radio-reviews/9868378/Obsessive-Compulsive-Cleaners-Channel-4-review.html

But, with the ridiculous ‘OCD Hand Sanitizer’ novelty gift (!), Paperchase have well and truly stepped up the trivialisation and taken it to whole new levels of stupidity. Theirs is a product that not only pokes fun at the condition but also at all of its cruel and horrendous components – namely repetition and ritual. If the sellers and producers of this appalling product had any comprehension of how crippling the repetitions and rituals can be, I would hope they would think twice before indulging in the marketing of such spectacular ignorance. But, aside from ridiculing the many people who live with contamination OCD, the ‘OCD hand sanitizer’ also manages to insult the many people who live with a form of OCD that has absolutely nothing to do with contamination whatsoever.

Hand washing and obsessive cleaning are often seen as the ‘textbook’ example of OCD, perhaps because it is a form that has some very obvious compulsions that are easy to spot (try disguising it in a public toilet when you’re scrubbing away at your hands like a surgeon!). But OCD is a spectrum. I am no expert, my knowledge of the condition is my own, but I doubt very much that there exist even two people whose OCD will manifest itself in identical ways. Some people fall into certain categories (contamination, hoarding, checking, for example), some people straddle more than one, some all of them. Contamination OCD is just one type, there are so many manifestations of this illness that I could not even begin to compose a list in a short blog post. My somewhat elusive point is this: by slapping the name “OCD” on a bottle of sanitising gel, the producers and sellers of this product are sending the message that OCD, by definition, is about washing your hands. Fuck that, Paperchase, fuck that!

(NB. to Paperchase’s dwindling credit, they eventually decided to remove the offending product following the perfectly warranted condemnation by several mental health charities and spokespersons.)

 And then there was Katie Hopkins. I am not really sure who this woman is, although I gather she has a large number of Twitter followers. A simple Google search brings up results relating to a stint on The Apprentice, a public spat with the late Peaches Geldof and various appearances on This Morning, which I do not watch. So, how does she fit in here? In the aftermath of Paperchasegate, Ms Hopkins took to Twitter to mock the company’s decision to remove the product from shelves, posting pictures of the product with various comments: (“The OCD bridge on the outrage bus wanted to complain, but had to go home to check the door was definitely locked”). Before long (and judge for yourself if it was a wise decision, but I have no regrets) I found myself responding to the tweet with the following comment: “Congratulations for adding to the ignorance.” Perhaps I was asking for trouble, but frankly I am sick of this shit. To which she responded, within seconds, with this peach of a tweet: “Being an OCD blogger must be really challenging. Does word have a spell double check?”

In the hours after this tweet three things happened. Firstly, I was amazed at the number of people who sent me some truly spiteful and angry tweets telling me (among other things) that I need to ‘get a sense of humour’, ‘get a life’ and get off Twitter completely – extreme? I think so. Anyone for freedom of speech? Secondly, I was genuinely touched by the number of people who seemed to show support for what I had been trying to say with my short but sweet tweet. Thirdly, I noticed a soar in the number of people viewing my blog. So at least I can thank Katie Hopkins for that.

For me, incidents such as this just highlight the fact that, when it comes to OCD – and mental illness in general – we are still faced with eye-watering levels of ignorance, an ignorance that is only turbo-charged when people take it upon themselves to make a mockery of human suffering. I am not saying that we should not have a sense of humour. There is a logic in humour, particularly with OCD, because I do believe that, if you can laugh at something, you are – on some level – taking away at least part of its power. Sometimes I do have to laugh at the fucking ridiculousness of my own rituals, because they just seem so whacky. But having a sense of humour does not extend to ridicule, and that is what the Paperchase product is all about. Ridiculing and trivialising a horrific condition. If people really understood how horrendous, debilitating and isolating mental illnesses can be, only the truly cold of heart would take it upon themselves to mock those who suffer from one of the many conditions that ruin the lives of millions.

A few years ago I watched a documentary called A Little Bit OCD, where we follow comedian Jon Richardson as he seeks to understand OCD and his own experiences with the condition. Richardson visits a lady named Joyce who appears to have a form of contamination OCD. Anyone watching as Joyce proceeds to disinfect bags of shopping before putting them away cannot fail to be moved by the way in which this condition has taken over her life. It permeates everything that she does.  She explains how OCD has affected at least three generations of her family: she suspects that her father was a sufferer (which eventually resulted in the breakdown of her parents’ marriage) and that she herself was diagnosed when she was pregnant with her son. Her condition at the time was so severe that she could not take care of her own child.

She reveals that her son was later diagnosed with OCD whilst studying at university. His life became so consumed by his condition (“all he could do was pace, and he paced all day and all night”) that, whilst in the midst of completing his PhD at Oxford University, he took his own life. He was, as she says, “a victim of this horrible, horrible, illness.” Undoubtedly one of the most heartbreaking moments of this documentary is when Joyce shows Richardson her son’s death certificate: the cause of death is listed, clearly and in black and white:

Obsessive Compulsive Disorder.

And that is the point. Disorder. Not quirky habit, not personality trait, not adjective, not marketing joke. A disorder. A lack of order. A chaos. An out of control compulsion to act on a fucked up obsession that no one chooses. This is not order. This is not a choice. This is not straight edges and even numbers. This is not being neat. This is not cleaning. This is not handwashing. This is being afraid. This is being a mess. This is being scared to death every single day. I do not believe that there was a maliciousness in Paperchase’s decision to sell their ‘OCD sanitizer’, nor do I believe there was maliciousness in Ms Hopkins’s attempt to make light of an illness that is so misunderstood. She simply does not understand. Very few people understand, which is why it takes people like me 17 years to go and see a doctor, 17 years of hell and shame. The only reason I agreed to go to the doctor at all was because I really did believe that I was on the verge of a complete mental breakdown. I wanted to die. So, please do not trivialise our experience by ridiculing it with cheap jokes. It is just not funny. It makes us feel so small and so weak, it makes us feel like we are the joke. If I am alone and afraid, please do not make me the butt of your joke. I am not a joke, I am a walking bomb.

There is a moment when Joyce sums up the whole point of this post better than I ever could: “This illness, in its worse form, kills… It is a time bomb ticking in our heads.”

I have OCD, this is my blog.

obsessive-compulsive-disorder

Four and a half years ago, I was diagnosed with Obsessive Compulsive Disorder. It came as no surprise, I had been living with it since the age of nine. Sitting with a group of friends at a sleepover, my life changed forever. One of the girls noticed that she had cut her arm and it was bleeding. I went to help her clean it, before another one of the girls said, “no, don’t do that, that’s how you catch AIDS!”

AIDS?

I didn’t know much about AIDS but I knew it was a terrible disease and it would kill me if I caught it.

When my parents came to pick me up from my friend’s party, I sat in the back of the car silent, wondering how I was going to tell my parents that there was a chance I had caught AIDS. Guilt like I have never ever known, before or since. How could I tell them? What if they caught it too? I would be responsible for killing my own parents. I sat at the sink that weekend and scrubbed my hands, over and over. But no matter how hard I scrubbed them, they would not get clean, they just never felt clean. AIDS was now a part of my life, not in a real way, but in a way that was entirely in my own mind – I was terrified for my life, for my family’s life. I could not let this terrible disease get my family too. So I kept on scrubbing. In the coming months I would scrub my hands so much that it would hurt to hold a pencil at school, as the skin on my knuckles would crack and bleed. I had the hands of an old lady with a skin condition – at the age of nine. My childhood was gone.

That was twenty one years ago. I am no longer in contact with any of the children at that party, we drifted apart, as most children do. I wonder if the girl who made the comment can even remember that I exist. She probably doesn’t. But the innocently inaccurate and innocuous comment of a child was the trigger to the biggest fight of my life: OCD. Do I blame her? Of course not, she was a child, and she said something that she did not understand. But I cannot help but wonder how different my life would have been if I had not attended that sleepover. Perhaps I would have ended up with OCD anyway, perhaps I would have been an obsessive checker instead of an obsessive cleaner, obsessively checking instead of obsessively scrubbing myself. Really, what’s the difference? It’s no one’s fault.

So, after 17 years I found myself in a doctor’s surgery with my father’s partner. I listened, exhausted, as she explained what I had become: a shadow of myself who spent hours at a time in the bathroom, endless showering, endless hand scrubbing, endless runs of the washing machine, endless washing of clothes, endless list of strange behaviours that only the OCD-er or the people who know them, can recognise or understand. And that was the stuff she knew about. But with OCD, you are an iceberg – only ten per cent is above the surface, the remaining 90% is the terror beneath, the torture chamber of your own mind.

That was four years ago. In those four years I have been on continuous medication for OCD, and for the first three years I was on the maximum dose for the condition. I had twelve sessions of Cognitive Behavioural Therapy (CBT), which helped enormously (when I finally met a therapist who actually knew her stuff about OCD). I was gutted when the sessions came to an end, I was scared about what could happen and if I would go back to that person who thought that putting Dettol on her own skin was a perfectly reasonable thing to do (unsurprisingly, my skin burned as a result). But the therapist’s confidence in my progress meant that I could start to feel some kind of confidence about moving on alone. A year ago I asked my doctor if I could start to reduce the dosage of my OCD meds, which she agreed to do, providing that we would closely monitor my progress. A year later I found myself in the doctor’s surgery again; exhausted, hopeless and utterly depressed. I was permanently on the verge of tears and, once again, I felt like I was trapped in this endless and horrendous cycle of OCD.

I was signed off work and have been off work ever since. Being off work has helped enormously, if just because it has given me a chance to get used to being back on the maximum dose again. It’s given me a chance to sleep. It’s given me a chance to focus on myself and stop lying to myself that everything is ok, when it’s not. It’s given me the opportunity to start putting myself back together. It’s given me time to try and go back to the CBT steps that I learned two years ago and see if I can work out where I am going wrong, what I can do differently. It’s given me time to go back to the book that I believe really saved my life four years ago, Jeffrey Schwartz’s Brain Lock (I would encourage anyone with OCD to read this book). It has given me time. I have felt broken for so long, and it is giving me time to try and fix myself, one tiny step at a time. I am so grateful for this time.

I have a long way to go and I am nowhere near where I would like to be. A friend of mine suggested that I use this time to write. And that’s where this blog comes in. I hope it can shed some light on what it’s like to live with OCD, for myself and for anyone else who happens to read it. If it can help someone who lives with OCD feel a little less alone, then all the better. I have decided to just write, without re-reading and re-writing. So forgive me if the posts read as something disorganised and haphazard, but that’s my brain and that’s OCD. I am just going to write.