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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It’s in the jeans

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At the moment I am sitting in a pair of jeans that I am pretty convinced could give me HIV. It’s a long and boring story but its main protagonists are: me, OCD, jeans, blood.

A few days ago, on my way to work, I happened to walk past some blood on the floor – now, I’m not sure if I actually stepped on it, but I walked pretty damn close anyway. So followed a day of feeling sick and contaminated all over. I kept myself to myself all day, and barely spoke to anyone. When I got home, I took off my jeans and put them by the washing machine (I decided that I didn’t have to throw them away because the jeans did not come into contact with aforementioned floor, of that I am certain as my jeans are not long enough. I did, however, throw away my trainers, trainers that are relatively new, because there is a chance they walked on some blood). I didn’t have to wash the jeans straight away because I have another pair of jeans that I could wear instead the next day – and they say that putting off the compulsion is a good idea or whatever.

I own, in total, two pairs of jeans that can be worn outside. Why only two? Well I just can’t be arsed to buy new clothes when the risk that I will have to throw them away runs so high. So, given that 50% of my denim property was waiting to be washed, yesterday I was left with no option but to wear pair no. 2., teaming with my current favourite jumper (a jumper that also happens to be fairly new). This jumper is nothing special but it is so unbelievably snug, it’s like a hug from myself to myself. I have even taken to wearing it around the house, it’s that cosy. So I was pretty happy yesterday when I left for work, clean jeans, nice jumper. No contamination, win!

After using a public toilet yesterday I went to wash my hands. I was feeling fairly okay, okay enough to not go down the extensive time consuming hand-washing route, but rather the normal, regular-person type of hand-washing. Just as I was rinsing away the soap from my hands, I felt a few droplets of water splash back from the sink basin. No problem, I will just wash them again. Then I spotted a tiny bit of what looked like blood on the side of the sink. It was the tinniest of amounts but it looked very much like blood to me. I tried hard to convince myself that it was make-up, or food or some speck of something else. But I am pretty sure that it was blood. So then starts the tidal wave. Along comes the old friend, hot lead, surging up the body like a sadistic cat, it alerts all of the senses, makes my skin feel like it’s burning. I try to assess where the specks of water actually fell, but the truth is I don’t know, so they might as well be all over my jumper. My jumper is effectively drenched in someone else’s blood. Someone who may, or may not have HIV. But for the sake of risk assessment, let’s just assume that they do. I am covered.

Long story short, I got home, had a shower, put the jumper in a plastic carrier bag to go in the bin. Jeans in the wash, just in case.

This morning, when I got up, I realised that I have no trousers to wear whatsoever. I am screwed. I have to choose between the pair no. 1 which are contaminated in my eyes because I was wearing them on the day that I may or may not have walked on a speck of blood in the street. Or I can wear pair no. 2 which are contaminated in my eyes because I was wearing them on the day that I may or may not have splashed myself with water that may or may not have come into contact with blood on the side of the sink. I decide that the risk is greater if I go with pair 2, so I decide to go with pair 1. In the panic and general self-loathing that ensues, I console myself with the knowledge that, at one point, I would have phoned in sick and not gone to work at all, rather than face the hell of wearing either pair of blood jeans. So at least that’s something. Er, yay….?

So, here I am, several hours into my day, I am wearing blood soaked jeans and everything is itching. Most of all my mind. I have popped one of the pills that I am to take when I am experiencing particularly high levels of anxiety (it’s one of the holy trinity of drugs that I am taking these days, it’s so much fun to be a walking pharmacy, pumping yourself full of drugs in the hope that one will fucking work). It won’t be long before I start to feel dopey and drowsy, before everything starts to feel a bit slow, and I start to edge towards feeling a little bit like a zombie. Which I guess is better than a hyena who can’t stop itching.

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.”