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.

It’s about eggs.

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It’s been a while since I’ve written a post and, the truth is, I haven’t been in the right frame of mind to write. As 2014 drew to a close and the prospect of 2015 loomed ever closer, I felt less inclined to write, and more inclined to try and forget. To be frank, I haven’t been in the mood to contemplate this illness, haven’t been remotely interested in sitting at my laptop and trying to explain how I feel. It has sapped so much of my energy in recent months and years that I think I was in need of a break, a break from consciously contemplating it. A break from thinking and reflecting on it. Living with it can be tiring enough. Then, yesterday, when I was making dinner, something happened that made me want to write.

Often, when people think about OCD, they think about cleaning. They imagine people obsessively cleaning their hands, scrubbing their bodies, disinfecting their homes. And there is some truth in that. But that is not everything, not at all.

It’s also about eggs.

Eggs? Yes, eggs. On my way home from work yesterday evening, I made a plan to have a (fairly) square meal, a meal that I would prepare myself (something that I have not been doing much of lately) and enjoy, warm in front of the TV. I had a particular craving for eggs. I really love eggs: little protein bombs, versatile and delicious. I opted for scrambled eggs on toast; quick, easy and nutritious. Having purchased a pack of ten fresh eggs on the way home, I loaded up the toaster and got to work. I cracked the first egg, and into the pan it went. I cracked the second, into the pan it plopped. Before firing up the hob, I nervously scanned the contents of the pan, hoping that I wouldn’t find anything disturbing swilling around with all of the protein and goo. Unfortunately, my eye was caught by a small brownish-red speck floating in the cold, clear, egg-white. I am not sure what the brownish-red substance was, but to me, in that moment, it was blood. Animal blood. And even animals can contract HIV, I’m sure of it. I throw the eggs in the bin, and get a clean pan. I repeat this entire process and, once again, I spy a tiny fleck of something sinister, lurking around the perfect dome of raw yolk. In a depressing moment of déjà vu, it results in my throwing away the eggs. I get another clean pan from the drawer (if this carries on, I’m going to run out of pans) and try again. Fortunately, this third time round I cannot see any brownish-red flecks anywhere in the pan; relieved, I get on with cooking my set of lovely clean eggs. I clear away the offending shells and disinfect the kitchen worktop, washing my hands countless times, just in case. I’m sad, because this entire fiasco has all but ruined a meal that I was so looking forward to, the first meal I have cooked from scratch in ages. I’m irritated because it has tainted what was otherwise going to be a quiet evening in front of the TV, but now I’m tired and on edge. I’m pissed off because I’ve thrown away four perfectly good eggs, because I thought they might give me HIV.

Food can be a minefield if you have contamination OCD. Pre-packaged food brings with it images of strangers in factories handling your food with hands covered in cuts, grazes and loose plasters. Images of blood getting into the food, plasters coming into contact with what I am about to eat. Fresh fruit and vegetables leads you to imagine fruit-pickers with dirty hands, perhaps cutting their hands on shrubbery, branches and fruit-picking tools (whatever they are!) as they work themselves to the bone. And who’s to say that there isn’t blood on my fruit? If I didn’t pick it, how do I know? It’s at times like these, when my mind wanders to blood, that I wish I had the patience to grow my own fruit; at least then I would know for certain – well, almost – that no one else had been able to bleed into my food. For me, the truly ‘safe’ fruits are the ones that have skins on – at least that way you can reduce the risk of contamination by cleaning, and then removing, the contaminated cover.

If I go into Starbucks for a coffee, or even into the local deli for a quick sandwich, I have to fight with myself not to examine the hands of the person behind the counter, scanning her skin for any signs of cuts or splits in the surface. I will also, if I am feeling particularly anxious, search her neck and face for any signs of scratches or particularly sore spots. If I can see any sign of blood or trauma to the skin, I will instantly want to leave. I won’t want them to touch anything that I am about to eat or drink. I will pray that I am served by the employee who has no signs of any wounds or dry blood whatsoever – her skin is so intact she could be made of plastic, yes she will do. I will feel particularly relieved if those employees charged with preparing all of the food are sporting disposable gloves. It might look clinical and – let’s face it – more than a little bit odd to see that the person loading up your sandwich is wearing latex gloves, but it really does take some of the underlying anxiety away, if just for a moment. It’s like the moment when you realise that the public toilets have a no-touch flushing sensor, or that most wonderful of bathroom devices – the hands-free tap system. One less thing to get myself into a state about, thank you universe!

A lot of my days can end up like my eggs – seemingly okay at first, on the surface everything is just fine. But then something so small will happen – a speck of something on the pavement; someone at work will get a tiny microscopic paper-cut and then later offer to make me a cup of tea; they’ll go and touch all of the doors and surfaces near me, rendering everything a danger zone; my shoelaces will scrape the floor which means I am making a conscious effort all day not so sit with my leg tucked under (as I normally do), which means I am uncomfortable at work all day; someone will send a well-intentioned e mail to the office talking about how, at this time of year, we need to be more hygienic as an office, and be wary of coughing, sneezing and spreading our bodily fluids (!) everywhere; she’ll then promptly distribute anti-bacterial wipes/sprays/gels – which is just an invitation for me to obsess. So, you see, the egg is tainted; there is always something that can ruin my eggs. I can be working my way through on a run of perfectly good eggs, but somewhere, in that batch, there’ll be a bad one. And it’s exhausting. It’s exhausting to know that, to anticipate a fall. I think that’s why sometimes, when I am having a really good day, I can get so excited and hyper – because I just know that I’m on a clock and, before long, I will be ruminating and obsessing about some fleck of nothing in the corner on the carpet. And it’s so draining, and so sad, to spend days hiding in my own mind like that.

I hope that will change soon.

Beauty and disease in autumn

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When I woke up this morning, I felt happy. Happy because I could see straight out of the window and the world outside was just spectacular. The sun, like a gloating puppeteer, was in her place at the sky’s throne, watching over the scene below, flooding the earth with light. The sky was the kind of blue that you will only ever see in autumn – deep, electric and laced with gold. The few clouds I could see were cheerfully bobbing across the sky; fluffy, bouncy and creamy white. The trees outside my window were ablaze with light, heavy branches bouncing majestically on a hearty October breeze. It was one of those perfect, crisp and heavenly autumn days that make you glad to be here to see it.

I spent yesterday evening with one of my closest friends, watching a film (very good – The Pentagon Papers), eating Chinese takeaway and sipping fizz. We chatted, we giggled, we had fun. When I got up this morning we drank tea, chatted some more and had a good chuckle about her eccentric new German teacher. It was brilliant. Normal. When I left at lunchtime, I strolled into town to catch the bus back to my house. I walked through her neighbourhood (incidentally, one of the most beautiful in the city) and felt so happy, so lifted and so grateful to be able to stroll into town of a Sunday, passing all of this wonderful autumn-ness that surrounds me. Yellow, orange, copper, brown, terracotta, red, bronze, maroon, green – all of the colours that make up the most perfect of autumnal palettes. I was so happy that I even stopped to take pictures on my phone. I contemplate a Facebook post in celebration of this most wonderful autumn (proposed status: ‘I may be biased, but an English autumn day is surely among the most perfect and most beautiful things imaginable….’).

In the midst of my happy autumn haze, I decide to take a coffee-shop pit-stop before catching the bus home – just me, my coffee and my new book. But then, of course, the universe shat on the dream. As I stroll across the main square, scanning the floor for HIV, I notice a few small patches of a brownish-red substance that screams at me from the pavement. I try to manoeuvre my way around the mess but am stopped in my tracks by a huge explosion of RED that is about 3 feet wide. It’s blood, I am sure of it. It looks to me like someone has split their face open on this pavement. I take a few steps back to have another look at the patches. I take a photo on my phone. That’s right, a photo. The reason I do this is because, in the midst of an OCD freakout, I cannot trust my own eyes. A photo is as objective as I can get in this situation so, perhaps, when I review the photo from a safe distance, I will see that it is not blood. But no, when I look at the photo again, I am fairly sure, this is blood. I would post a picture of it, but I don’t want to prompt feelings of anxiety in anyone that has similar blood contamination fears*. That it has ruined my day is enough, let it not ruin someone else’s. (*I decided to post one of my Perfect Autumn pictures instead….)

As I walk away, I check the hem of my trousers – is it touching the floor? Yes. Fuck. I can’t stay in town any more; I go and get the bus back to my end of the city. I know in my mind that I am going to have to throw my shoes and trousers away when I get home so, when I get off the bus, I dive into a coffee shop to sit for a while, just to put it off a bit longer. I order a croissant and coffee but, by the time it arrives, I am crying and I can’t even taste the croissant as I wolf it down. I find myself resenting the woman in the corner who is in the process of analysing her relationship to her companion. Everything about her is pissing me off – and that’s not because she’s done anything wrong. It’s because she’s enjoying the normality of going to a coffee shop and just hanging out. She’s got her feet casually resting on a chair, then she’s got them tucked under her – she is not in the least bit concerned that she has HIV on her shoes (or, maybe she is? After all, there are no better masters of disguise than those who live with anxiety….). I hate that I can’t be her. I wonder if the photo I took could somehow contaminate my phone. This fucking disease. My mind disease.

I cannot stop crying and it’s embarrassing. I walk home. I plan ahead to go in via the back door: if I have to take off my shoes and trousers before I get in the house, it’s better that I do it at the back door, and not in full view of the street. As it turns out, it’s not much better going in via the back door as my garden faces a row of houses on the adjacent street. It’s pretty humiliating to think that some unfortunate observer may look out of their bedroom window just in time to see a 31 year old woman undressing herself on the doorstep. I take off my shoes, my trousers and my pop-socks, leaving them in a pile outside my backdoor, I’ll deal with them later. I walk into the house, grateful for the sanctity of a relatively clean floor.

I lock the cat-flap behind me – I can’t risk the cats coming in at this point. The reason for this is the Trail of Contamination: the cats would have walked on the same pavement that I have just walked on with my blood shoes, which means that they will have blood on their paws, which they will tread all over the carpet and all over the furniture. Blood everywhere. They are such sweet cats, and have been my little companions these past few months while I have been signed off work. They sometimes like to climb on my lap and sit, their little paws just draped over my knees – it’s a welcome comfort. But there will be no sitting on my lap, no blood paws today. I have to keep this space as clean as possible for as long as possible. I will let the cats in soon – I have to – because it’s not their fault I’m crazy. But, for now, I just need a few moments in a clean space, before it all becomes contaminated.

Drunk in blood

keep-calm-and-donate-blood-5

When I completed my first course of CBT two years ago, one of the ‘goals’ of my treatment had been to get to the stage where I could walk into a blood donation centre and give blood for the first time. It had been something I had always wanted to do but, for obvious reasons relating to contamination and crippling fear, I had never been able to do it. In fact, each day when I walked past the local blood donation centre on my way home from work, I always walked on the opposite side of the road. I couldn’t bring myself to walk that closely to a place whose sole business was human blood.

So, here I was, a month or two after my CBT course had ended, sitting in a waiting room of a blood donor centre. If it wasn’t such a clusterfuck of anxiety, emotion, fear and lead hot nerves, I think I could have probably found the whole thing quite funny in its ridiculousness. A contamination OCD-er in a blood centre? Ha! Walking into the centre alone, through the gates, onto blood ground, was a big enough step in itself – I suppose I could have just left it at that for one day, having at least taken that one monumental step closer to freedom from OCD. But, for whatever reason, I carried on right in. I opened the door, trying to ignore the sound of my mind screaming at me that there was blood all over the door handle. I was given a form to fill in – shit, how do I know the woman who just gave me this form hasn’t got blood all over her hands?! Where is the nearest toilet? Am I able to wash my hands somewhere?!

 I look around. Ahead of me is the Post-Donation Area – cups of tea and biscuits abound. This is where donors sit reading magazines and sipping sweet tea, safe in the knowledge that they have just done a good deed for the day, perhaps even helped to save someone’s life. They are quietly smug and demonstrably chuffed with themselves – and who can blame them? Most people don’t give blood – even though we really ought to – so, good for them I say! Feel smug, good deeders, for you have earned it! Besides, at this point, my attention has been diverted to the cotton wool pads that have been fixed to their arms to stem the bleeding. Underneath those pads, they are bleeding. Actual blood. Red, dangerous, blood. I start to wonder if any of the Smug Ones have perhaps come into contact with their own blood. I wonder if they have actually washed their hands – or are they just sitting with blood soaked hands? There is blood on their hands; these people who are now handling the tea machine and biscuits.

 I fill out my form and, there it is, in bold and in black and white. The word. The letters. The three letters that have me sitting in a clammy cold sweat, restlessly fidgeting and scanning every inch of this room: HIV. They have to ask you about it, of course they do. You can’t give blood if you are HIV positive. You can’t give blood if you have had sex with someone who is HIV positive. The list goes on. There is something about a capitalised acronym that gives weight to any term. Think about it, in the movies, you never see FBI officers running around with jackets emblazoned with their logo in lower case, do you? The authority of the Bureau would seem fairly diminished if its officers were forced to wear jackets with “fbi” on the back. No, it’s FBI for a reason – the capital letters tell you to bow down and be afraid, bitches! Be very fucking afraid. Ditto goes for HIV. The capitalisation somehow packs a punch that symbolises a greater power. You need to be scared of this.

 Having filled out my form, I take a seat and fidget my way through the next ten minutes or so. I distract myself by updating Facebook, encouraging people to donate blood if they can. A few friends start liking my status – all but two of them thinking that my status is about the act of giving blood. And in a way, yes it is. But mainly it’s a FUCK YEAH to myself because I am sitting in a blood centre and I am not screaming and I am not crying. I am just sitting (albeit restlessly, twitching like I’m on some kind of come down). A small nurse carrying a clipboard calls my name and ushers me into a side room. I’m wary of touching handles, of holding doors, who knows what the fuck is on them. But I follow her anyway, feeling a little more empowered with every passing minute.

 In the room we go through the form, she explains what will happen. She takes an iron test, which involves having my finger pricked before a drop of my own blood is squeezed into some kind of solution that apparently gives the go ahead for my donation. Suddenly, the table upon which the solution rests becomes toxic, and I am instantly very aware of my surroundings, my sense of danger is heightened and my stomach burns. My eyes are fixated on the cup of solution – how many other people have bled into that solution? And how many have then placed their punctured skin on this table, dripping blood all over the exact spot where my arm is now rested? I look at the nurse, who doesn’t seem to flinch. I am flinching. It doesn’t seem to occur to her that this table could be covered in HIV. Her hands, her pen, that form, this room. We are sitting at a table of blood and she is not even wincing. There is not so much as a disinfectant wipe nearby. Does she even wash her hands between donors?

 As she wraps up, she asks me if I have any questions. I seize the opportunity and ask her if my blood will be tested for HIV (for an OCD-er with my kind of OCD, this is a huge bonus to giving blood – it’s an inadvertent HIV test, which, for someone who is permanently afraid of contracting the virus, is quite a terrifying-but-good thing. At least I will know….). I ask her if they will let me know if my blood comes back as having tested positive for HIV. She looks more than a little concerned at this question and asks me if I am expecting it to come back as HIV positive. Suddenly realising how odd this question must seem to her in this context, I end up muttering something about how I have OCD and how this entire event is a goal of my CBT therapy. Looking perplexed but fairly reassured, the nurse looks at me, nods very slowly and shows me back into the waiting area, where I am placed in a queue to Give Blood.

 When My Time Comes, I shuffle over to the donation station, all the while trying to stay the thoughts and simultaneously pay attention to what is actually happening. A chirpy, chipper nurse introduces me to an odd looking contraption, not quite a chair, not quite a bed. It’s a wipe clean affair, which means that, in theory, it should be clean and disinfected. The thing is, I do not see the other nurses disinfecting the chairs between each donor, so now I am wondering exactly how much blood there actually is on this thing, and how contaminated this whole space is. Underneath the bed-chair, there is a box where I can put my belongings – thank Christ, because there is no way in hell I am putting my stuff on the floor. Shit knows how much blood has been on this floor at one point in time. So much blood in one place, there is bound to have been an accident at some stage – leaking blood bag, needles on the floor, open puncture wounds dripping blood everywhere; the whole room is bound to be contaminated in some way. Ahead of me there are shelves of blood, literally shelves of blood. Boxes of bags filled with human blood. Someone once told me that one in every hundred people* in Britain is HIV positive, which means that – statistically speaking – one of those bags could contain blood that will test as HIV positive. I am sweating. My whole body is on fire. I am fighting every instinct to get the fuck out of there before it is too late, before the contamination ‘sets in’, before the contamination of this bed-chair seeps through my clothes and onto my body, onto my skin and into my blood stream.

 (*I have since learned that less than 1% of the population is HIV positive, which means this statistic is way off. Lesson: question everything.)

 The aforementioned chirpy, chipper nurse sets about trying to find a vein. She gives me the ‘sharp scratch’ spiel (sharp scratch my arse!! It’s a fucking puncture!), and inserts a chunky mother of a needle into my left arm, before hooking it up to the Flimsiest Looking Bag You Have Ever Seen (don’t tell me those things don’t split all the time!). She comments on the speed with which my blood is flowing into the bag – I am not surprised, my whole body is on fire, my blood must be surpassing the speed of light if my thumping heart is anything to go by. I set to work trying to do the hilarious leg lifts and butt clenches that you’re supposed to do during the donation, to keep the blood a’ flowing. I look around and, suddenly, in the midst of the anxiety, and in the midst of feeling like I am literally drowning in blood, I start to feel a little bit smug. Smug because I am here, smug because I am helping someone somewhere, smug because fuck you OCD, look at this!! Three months ago I couldn’t walk on the same side of the street as this place, yet here I am, hooked up to a machine that is sucking out my blood. Sat next to a bunch of other people who are hooked up to machines that are sucking out their blood. Blood, blood, blood, blood, blood.

 I start feeling quite comfortable with the chirpy, chipper nurse. We begin to tread the path of small talk which is a welcome distraction, to say the least. I am feeling more pleased with myself than I have in a very long time, so much so that I cannot resist telling her that my being there is more than my being there. This is a CBT goal and I am kicking its arse (kind of). I don’t think she quite understands what the fuck I am going on about, but I can see that she understands that, for me, this is a Big Fucking Deal. She congratulates me, she smiles cheerfully and I am thankful for this moment. I know that it was a long time coming, and I know that the next time I kick OCD’s arse in this way may be years away, so I am relishing every second of this. I am being a normal person doing a normal thing, just giving blood, just living my life. Look at me. GO ME!!

 “She’s going! Let’s get her upside down!”

 That’s right, I passed out. I wouldn’t be surprised if it was emotion, adrenaline or just sheer relief that it was over. My brain probably just thought to itself, fuck this, I’m taking a time out!

 I walked out of that blood donor centre like a rock star. I sent texts to tell the people I knew would understand. They did, and it was wonderful. I was drowsy from the momentary pass-out, excited at the achievement, and just generally feeling so damn alive! At last I could count myself as one of the Smug Ones! Yes! You can just call me Ms Smuggy Smug McSmug. Then, I did what I always do, I put headphones in my ears and strutted (well, as much as anyone can strut when feeling slightly sick, delirious and a little drunk) all the way home, wearing the cotton pad on my arm with pride.

 That was two years ago. I have some way to go, but I cannot wait to be able to do that again.

 One day!

PS. If you are physically and mentally able to give blood, do consider it. You may save someone’s life. For more info, go here – http://www.blood.co.uk/index.aspx

Coming out of the OCD closet

danger_zone-t2

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.”