The Butterfly Effect: The Thyroid and Mental Health

It’s been a while since I have written. And that’s mainly because I just haven’t had the energy; which, it turns out, happens to be the point of this post!

I’ve mentioned before (see previous post “OCD, medicated and fat”) that I have, for some time, been struggling with my weight. The truth is, I have always struggled with accepting my body, but over the past couple of years it has become increasingly difficult to look at myself in the mirror without wanting to cry. The main reason for this is because I have gained so much weight – I am talking a serious amount of weight, I’m talking being the biggest I have ever been in my life, shopping in plus size clothes shops and still not finding stuff that fits properly. I’m huge. When I take a shower I avoid looking down, I don’t want to see what it all looks like. I wear clothes that are as baggy as possible and try my best to avoid taking pictures that show anything below my neck. It’s out of control. Aside from the weight itself, the thing that has upset me the most is the feeling of not being in control of my own body because, no matter what I do, the weight just won’t budge. I have even started working with a personal trainer to try and get this mess under control.

Over the past year or so, there have been a number of other symptoms that have started to surface; symptoms which, on their own, don’t mean a great deal but, when pieced together, paint a picture of someone who is far from healthy:

Steady and consistent weight gain

Depression

Irregular and heavy periods

Extreme fatigue

Oversleeping

Dermatitis

Pains in my ankles and in my legs (so much so that, sometimes, I struggle to walk)

An extremely slow digestive system

Dry/brittle hair

Difficulty concentrating/remembering simple things

Swollen hands/feet (I recently had to cut a ring off my finger)

The list goes on.

It is because of this combination of symptoms that my partner has, for some time now, been trying to convince me to go and get my blood tested, to check that there wasn’t an underlying cause for all of this. It took me 6 months or so to pluck up the courage to go because, shockingly enough, as someone whose OCD centres around a blood-borne illness, I wasn’t exactly skipping to get my blood tested. Generally, I try my hardest to avoid those situations that might prompt an OCD freakout – which means that a doctors’ surgery (and, specifically, the room of a phlebotomist) is never going to be up there on my list of Places I’d Most Like to Visit. Also, after being on medication for 5 and a half years now, I certainly wasn’t relishing the prospect of potentially being put on yet more medication. My medicine cocktail seems to get bigger every time I pay a visit to the GP these days…

It all came to a head in recent weeks, when I have generally just been feeling very down and have found myself getting more and more frustrated with the way my body is behaving. It would be fair to say that, sometimes, it has felt like my body has been betraying me; and not just because of the weight, but because of all of it – the constantly wanting to sleep; the horrendous periods that just leave me exhausted, drained and in so much pain; the depression; the digestive system that seemed to not be working. All of it. I think I just got fed up of feeling so shit.

So I went to the doctor and he arranged for a full blood screening, which really wasn’t fun. Watching the nurse just casually handle the vials of blood; wondering how sterile that arm strap is (the one that they use to get at veins, at least I think that’s what it’s for); feeling embarrassed as I asked her why she wasn’t wearing gloves. My body was rigid as an ironing board when she stuck that thing in my vein, so much so that I ended up with a nice juicy bruise where the needle had been. One vial, two vials, three vials, four vials, five vials of my own blood. I wanted to be sick. The results came back a week or so later and it turned out that I was showing signs of hypothyroidism, a form of thyroid disease. So I would have to go back for more blood tests. Hurrah.

Off I went for more blood tests. Again, so much fun. Particularly as this nurse had left the vials of SOMEONE ELSE’S FUCKING BLOOD on the desk. Again, another bruised arm. I really hate blood tests. This time the tests confirmed what the doctor had suspected – I have a form of thyroid disease. The doctor was very nice (I have recently switched GPs) and explained the whole thing to me, he even drew me a diagram to illustrate exactly what my mischievous little thyroid has been up to. So, as far as I understand it, my thyroid has become oh so confused by its own existence and has resorted to basically attacking itself. Now, as a result of this chemical self abuse, it is failing to make enough of some special hormone that is the key to eternal health (okay, slight exaggeration, but it turns out that your thyroid is pretty fricking important, and kind of acts like a mini brain that controls the goings on of the body’s hormones. Pretty big stuff for a little butterfly-sized piece of tissue that sits in your throat). So my thyroid is broken, which means I will be on a replacement treatment for the rest of my life, literally for the rest of my life. Gutted. I am beyond gutted. And really sad. First, my brain is broken because I’m crazy and I have to take pills for that, and now my thyroid is packing up which means yet more pills (on top of that I have also learned that I have insufficient levels of both vitamin D and iron, which means supplements for the foreseeable future – but at least that is only temporary).

When I initially learned that it was suspected hypothyroidism I sent a text to my friend (who herself has been to hell and back as a result of a hyperactive thyroid, which is a different form of thyroid disease) who promptly reminded me of the positive of the situation – i.e. at least I now know what has been the cause of all of these things and I can move forward with the treatment. I won’t lie, there was a part of me that almost felt vindicated; all this time I have been feeling so ashamed of my weight, so embarrassed by my lack of energy to do anything, so baffled by the permanent brain fog that has just been suffocating my mind. Not being able to concentrate on the easiest of tasks, not being able to remember the simplest of things, hobbling like an old lady down the stairs whenever I got the pains in my legs; all of it had just made me feel so worthless and so pathetic. Now, all of a sudden, it made some sense. And it was kind of liberating to know that I wasn’t doing this to myself, that it was something beyond my control. My partner, who is a doctor, also said that there was a possibility that the thyroid disease had contributed to my falling into depression in the summer of last year. Apparently, the issue with the thyroid could have been building up to this point for years, which would certainly explain the weight gain at least. Either way, I hope that the treatment with help.

I am currently on day 3 of my new meds (thyroxine). My GP said that I should start to notice a slight difference in my tiredness levels after a week or so which is definitely good news and I am looking forward to that! The other day I felt so exhausted after I had taken a shower that I had to lie down; I ended up falling asleep for five hours. So, as far as I’m concerned, the prospect of having more energy is definitely one I can get on board with. As my Dad put it, hopefully I will start moving again soon – I really hope so. In a couple of months I will have to go back for more blood tests to see how my thyroid is reacting to the treatment so far; if necessary, the docs will adjust the dose. So it looks like blood tests are going to be a feature in my life from now on. But I’m trying to hold on to the positive – my friend is now referring to us as the ‘T Birds’, owing to our shared thyroid related issues. Well, I always did love Grease.

So, what’s the point of this post? Basically, I wanted to post this to encourage anyone with any of the symptoms that I have mentioned above, to go and get your thyroid checked. It’s so important to be aware of what your thyroid is up to, especially for those of us that live with one of the many forms of mental illness, of depression, of anxiety. To think that this little piece of tissue has the power to do so much to our bodies and to our minds; to think that it has the power to plunge a person into a deep depression – this is a powerful little butterfly-machine, and if it’s not working properly, the effects can be horrible and they can be debilitating. I am not saying that the thyroid has caused my own depression, I can never know that, but I am so glad that I am now aware of the connection between thyroid health and mental health.

So, if you do one thing this week, book an appointment with your GP and go and get your thyroid checked!

You can find more info about thyroid disease here: http://www.thyroiduk.org.uk/tuk/index.html

Guest Blog: “Dear Jack…” – One Mum’s open letter to her son with severe depression

“Dear Jack” is one Mum’s open letter to her son as he battles with severe depression. Thank you to the author of this letter for sharing such a beautifully written and inspiring post. You can read the post here:

https://diaryofanocd.wordpress.com/guest-blogging/dear-jack-one-mums-letter-to-her-son-with-severe-depression/

 

Dear Mr Prime Minister

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?

The Dread

The Dread is a feeling that sits, like a piping hot pool of thick tar, just above your belly button, smack bang between your ribs. It sits there all day, pulsing, contracting, expanding, brewing. It makes me afraid to move, afraid to think, it makes me fear the day ahead. Something, or everything, or nothing at all.

It will begin from the moment I wake up, The Dread. And it will stay with me all day, just lounging around at the base of my ribcage, not really doing much except making me feel afraid. It transforms my belly into an engine-room of panic. Everything feels like an effort, everything feels like a threat. I find it almost impossible to concentrate on anything, on anything but The Dread. Each breath is limp and shallow, I feel lightheaded and slightly drunk, drugged. Tea doesn’t taste the same, it tastes of Dread. Food doesn’t taste the same, my mouth has gone numb, and the sensation of semi-chewed sludge as it lands on my stomach makes me feel sick. I wish my body would tell me what my mind does not seem to know.

The Dread is like radiation. You can feel its undulation sweeping aggressively through your torso, rhythmical waves of fizzy alarm. The air that surrounds me begins to condense, shrinks and compresses against my chest, soft but firm, gentle but unrelenting, a pressure pad, with flesh of steel. My lungs shrivel up, like dried fruit, they are evaporating in the heat, for they too are afraid of the feeling.  Breathing is strained, my chest is so tight that, with each inhalation, air only goes so far before stops at the base of my neck, there in the little pool that marks the cross-roads of the collar bones, that suprasternal notch. There is a thick and dense plug there and, despite my efforts, I can’t seem to swallow it away. And when I do swallow, it is a short-lived relief, because my mouth soon turns back to sand, drying out almost instantly. My lips are cracking and are sore to the touch.

I begin to wonder if the blood has stopped pumping around my body altogether, because every single extremity feels disconnected, so much so that my hands tingle. I wonder if the blood is just floating, aimlessly, not really on its way anywhere, just hanging around in a lull, waiting for The Dread to go. Like children, taking care to tip-toe around the house so as not to wake their sleeping parents upstairs, softly softly it goes. It daren’t disturb the sleeping beast. My eyes are heavy and they want to shut down for a while. But, even if I could lie down, I wouldn’t sleep. The Dread throbs like it is its own heart, its own life, existing in its space, independent of me.

Sometimes, I feel like my body and my mind hate each other. They don’t seem to work together, they seem to work against one another, constantly keeping little secrets from one another. Each one seems to work so hard to make the other feel afraid. My mind tricks my body, my body tricks my mind. It’s one big game of terror chess. I convince myself that my body can sense something that my mind cannot, although I know this is not the case. There is no sixth sense. And yet, my body knows something. Death or disease, or some almighty fall that is waiting. I will fail today, my body already knows.

Grief is one of the hardest things.

Even when it’s over a decade old. Even when you no longer resemble the person you were when they left. Even when you have to fight sometimes; fight to remember her voice, fight to recall the intonation of her accent: would she have said it like this? Or like that? I never heard her say that word, so how would she say it? Exactly how would she have said ‘Barack Obama’? When I hear people with her accent, it shakes my heart. Bizarrely, it makes me feel lost and home at the same time.

It hurts to know that I won’t see her again. It hurts to know that I saw her for such a short time to begin with. I wasn’t even a proper person when she went, I was barely getting started. When she left, I knew nothing, had lived nothing. The last time she saw me I looked and sounded so different, my voice was shriller and my eyes were manic with everything that I did not yet know. I had never had my heart broken by a death. I had never sat and cried so much, the kind of cry that is so utterly helpless and broken. The kind of cry that has no resolution, because it just aches. There is a truth to the term heartache. It aches the whole body to know that you can’t see her face, how it would be now, if she were still here. I can see all of the colours that are fused together in her eyes, all the shades of blue. Where her eyes are bright, mine are murky and dull. She was an electric woman, and I found safety behind her. I was a poor consolation prize for the ones who loved her.

I hate myself for not realising at the time, that I had so little time, that we all have such little time. I should have spent every one of those remaining days telling her everything she needed to know – that she was the most loved of mothers, and I loved her so completely, and that, for all of the times I had been mad at her, I would never stop loving her. She was the first voice I had ever heard, her heart was the first sound my body had registered outside of itself. I had a space in her belly, and that belly is gone. I will never get to use the word ‘Mum’ in the same way ever again. And to know that is something that can take my breath away, every single time. I hear people say ‘Mum’ and I wish I could do that too.

Grief catches you in your days, and in your nights. In the days, it catches you when you find yourself wanting to share something with her, however small or insignificant it might seem. In the nights, you dream that she is still alive so that, when you wake, you have those few seconds of wonder: “Is she really alive? She didn’t die?” But she always dies again. I couldn’t save her in real life, with my prayers and my begging to the Almighty. She went anyway. She goes anyway.

The other day I sat with her for a while, and there was a part of me that wanted to lie there in that spot and fall asleep forever. Hug a headstone, it’s all that’s left. Cut back the branches that are creeping around her name, they are blocking her light, she can’t see. I feel grateful that I can’t hear a peep out of civilisation here. We are alone.

The love you feel for your parents, it never changes, you will always love them without thinking, without contemplation. You love your parents before you know yourself. So when one leaves, you feel like a part of you has gone. Like there is a part of you that has shut down, no one else has the access code to it, so it will die from lack of use. There is a you that they knew and you forget.

I will never see her again, and that hurts my heart. My parents, by raising me, made my heart together – half is gone, but the other half is here, is my friend, and loves me even when I don’t love myself.  I hope he knows how much he is loved by me.

It’s about eggs.

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.

Insanity – aka Shaun T is my kick!

So, I have decided, after months of being fat, and being the biggest that I have been in my entire life, I need to start moving. One thing that has been an absolute constant this year has been the feeling of helplessness, of not being in control of anything. I have spent so long waiting for referrals, for appointments, for change to happen with the OCD that I have come to the conclusion that I am no longer in charge of my own existence. It’s really scary, and I feel like my ever increasing weight symbolises this more than anything. The less in control I have felt, the more I have locked myself away; the fatter I have become, the less I have moved; the more isolated I have become, the less I have felt able to face the gym. I tried attending a kickboxing class for a few weeks, but I felt so huge and self conscious that, after a while, I couldn’t face going. I tried going to the gym, and I was beginning to remember how much I used to love it, but – again – I just feel like such a fat fraud, I couldn’t lift my own body weight, I was just a mess. I am a mess. I miss being physically strong, fit and just okay with my body. It’s not solely about the weight, I miss being able to push my body to limits, to push my fitness and my strength; I miss the tightness of my body holding itself up with confidence, I miss being able to walk a little taller.

A few years ago I started Shaun T’s Insanity programme. I kept on it for about six or seven weeks but then, owing to recurring back problems at the time, I had to stop doing it. Whilst I never completed the full 9 week schedule, I have to say that the Insanity programme is by far the best thing I have ever done for my body. Before I started, even though I was quite fit, I had never been able to do a full push up – by the end of week 7 I was doing full push ups whilst travelling across the floor. Such is the power of Insanity – it pushes you to the absolute max and, hand on heart, I don’t think that there could possibly be, on this entire planet, a personal trainer as fantastic as Mr Shaun T. I remember when I first saw the infomercial, I was excited and afraid at the same time – Shaun T reminded me of an army drill sergeant that you see in the movies, he expected nothing short of hard work and litres of sweat. Inspired by the fact that the people in the video were actually sweating, I ordered my programme and waited with fear/excitement.

Once I started, I realised that Shaun T is actually incredibly motivating and inspiring. He really makes you believe you can do everything that he and his fitness friends are doing – “YOU CAN DO THE SAME THING WITH YOUR BODY!!” – it’s amazing stuff. Besides, he also seems to be just an all round awesome guy who ends up being your on screen training partner throughout the whole process. Even when I’m yelling at the TV screen, “YOU ARE OUT OF YOUR MIND, SHAUN T!!”, I am still pushing myself to do it. Plus, I never tire of the many Shaun T –isms that I know are coming: “THAT SHIT IS BANANAS!”, “I’M NOT TRYING TO HURT YOU, I’M TRYING TO MAKE YOU BETTER!”

 So, that was then, and this is now. And now I am fat. Very fat. And unfit. And about as flexible as a plank of wood. I am out of shape and in need of a kick up the butt. So Shaun T is going to be my kick. I am starting today, and I am going to be updating week by week as I go along. The main purpose of my doing this is to feel better about myself, to not feel so ashamed of my body, and to not feel quite so helpless about the way things are right now. I may not have any control over the OCD, or the Depression, but I can do something small to help my body, even when I can’t help my mind. I know from experience that fitness and health certainly helps when it comes to seeing things more clearly, so I am working towards that too. I don’t doubt this is going to be so hard, but I also know that there is a reward at the end of it. If I can stand tall, look at myself and think, “hey, I may not be perfect, but I’m doing my best” then that will be enough. The programme is nine weeks long, and this is my first week.

 I’m off to do workout number one – Plyometric Cardio Circuit – wish me luck!

 Ps. If you want to join me, you can get Insanity here:

Amazon – http://www.amazon.co.uk/Insanity-Ultimate-Workout-Fitness-Programme/dp/B002QZ1RS6/ref=sr_1_1?ie=UTF8&qid=1416317281&sr=8-1&keywords=insanity

Beachbody (with an option to pay in instalments) – http://www.beachbody.co.uk/product/fitness-training/insanity-workout.do

The First Psych Consult

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.

OCD, medicated and fat

Since I started blogging a couple of months ago, one of the things that I have noticed is that often, when people are struggling with one mental illness, they are also struggling with another. If they’re really unlucky, they may find themselves struggling with more than that, which prompts me to wonder how on earth they face the day. I have nothing but the utmost sympathy for anyone that does this. There seems to be some kind of intersectionality of mental illness; I sometimes wonder if we have a mental-health-specific immune system. I imagine that it works in the same way as our regular immune system, so that when we are affected by one condition, we instantly become more susceptible to others. I hope that I am wrong, but it’s just how it seems sometimes. Too often do anxiety disorders seem to come accompanied either by a side dish of depression or by a secondary, (sometimes tertiary) anxiety disorder. With mental illness, there is no such thing as fairness.

When I was first put on my OCD medication four and a half years ago, I remember reading through the Papersheet of Doom that they enclosed with the meds. Among the many unpleasant side effects that go along with taking this stuff every day include: insomnia, headaches, diarrhoea, nausea, fatigue, nervousness, anxiety, feeling tense, decreased sex drive, tremor, dizziness, excessive sweating… [and the list goes on]. Hilariously, there is a disclaimer that says that you should contact the doctor immediately if you should fall into a coma. Which is always good to know. Unsurprisingly, I wasn’t skipping to take my first one of these pills.

Within a couple of weeks the side effects started to settle in. I felt nauseated a lot of the time, I found that I was trembling for no reason, I was nervous and on edge just sitting at my kitchen table. There was a constant knot in my belly and I felt like crying for no reason whatsoever. And then there was the fat. It did not take long before I started gaining weight. Despite the fact that it was listed in the aforementioned Papersheet of Doom, I didn’t think it would actually happen.  But, as the weight crept on, the clothes felt tighter and I got more and more fucked off. I upped the exercise ante in an attempt to stay the swelling of the fat tide. It worked to keep my body on a fairly even keel, and minimised the fat fluctuations.

Last year, after a discussion with my doctor, she agreed to allow me to reduce my dosage from three little pills a day to two. I thought I was doing ok with the reduced meds, I seemed to be maintaining the OCD (however much you can ever really ‘maintain’ it), and in my mind I felt so relieved that I was well on the way to Getting Off Those Bastard Pills. I had always hated taking them. Hated being tied to them, hated the prospect of having my brain chemically altered in any way, hated the way they would sometimes lodge themselves in my throat, causing the white powder to puff up into my throat, a haze of compounded pollutant lacing my mouth and my nose. There is nothing quite like the pungent taste of brain altering chemical concoctions in your mouth, yuck. Of course I want to get off this shit.

Looking back now, I can see that the worsening of my OCD and gradual onset of depression was probably, in part, a result of this reduced medication. I did consider it at the time but I tried to convince myself that it was just a phase that I would have to go through as my body adjusted to the reduced dosage. I was sure that my body wouldn’t let me down, it would catch up eventually and all would be well. Except that it wasn’t. My body never seemed to quite do what it was supposed to. In the late autumn/early winter of 2013, I started to feel less and less like myself. My OCD kept going from amber to red; occasionally back down to green, but mainly hovering around amber and red. I started to feel sad a lot of the time. I was getting frustrated with myself and my apparent inability to sustain a change in my life. I felt like I was drifting backwards. As the OCD was gaining steady momentum, the latent feelings of self-loathing started their steady climb. Functioning like a normal human being seemed like a daily Herculean task of which I was just not capable. I sought escapism in Netflix, in catch up TV, in staying up listening to news channels, in leaving myself behind. And eating. I began to eat and eat and eat. It is only when I look back now that I can see how much.

Six months of over eating later and I had put myself at the biggest I have ever been in my life. These days when I look in the mirror, I genuinely do not recognise myself. I look like my old self in a fat suit. My face is round and flabby and my body is a disgrace. I hate looking at it. I wouldn’t even dream of looking at my naked body in the mirror, I am sure I would find it repulsive. My clothes don’t fit and I can feel my heaviness in everything that I do. These days, I do everything much more slowly, like an old lady. I waddle like a rotund and plump duck and I can feel my ever expanding belly spilling over like an inflatable mushroom. When I see myself in photos it makes me cry. I look so unhappy, so ashamed of my body, so disgusted with myself. My face is the face of someone who just hates herself. What’s worse is, I don’t have a shred of sympathy for myself, I look at myself and think, ‘look at you, you disgusting fat fuck! Who would look at you and see anything other than fat? Who would look at you and see anything other than a slob, a lazy, greedy piece of shit?!’ That is what I see. And that is how I feel, like I have betrayed myself in every possible way.

What’s weird is that, when I look at overweight people in the street, I don’t feel any of these things. I don’t assume any of the things that I assume about myself. I detest fat-shaming (if that is even a term!) in all of its forms. I hate that the diet industry keeps people (particularly women) chained into patterns of self-loathing/diet relapse/weight gain. I hate that, somehow, weight has become intrinsically linked to a person’s value and self-worth. I think that all women (and men!) should be free to wear a bikini regardless of whether they are a size 18 or a size 38. I think that everyone should be free to eat whatever the fuck they want without incurring the judgement and condemnation of strangers. Above all, I think that everyone, regardless of their waist size, should be judged not by the number on their bathroom scales, but – in the words of a great American – by the content of their character. But, for whatever reason, when it comes to myself, I do not afford myself the same courtesy.

These days, when I am walking down the street in big, baggy, ugly clothes, I feel ashamed. I hate being out in public, especially in daylight, because I just feel the judging gaze of passers-by. I know what they’re thinking when they see me – that I’m a mess. Because I am a mess. I am a fucking mess of shit. I sense people looking at me and I feel like I am in disguise, like I am wearing the body of someone I do not know. I want them to know that this is not me. I am not someone who looks like this. I am not someone who wears black all the time. I am not someone who scrapes their hair back into a mess without so much as glancing in the mirror before stepping outside. I am not this person. Except I am. At this moment, this is who I am.

In all honesty, I have never seen the Fat Issue as a mental health issue at all. I have just seen it is my own personal weakness, just something else I can’t control, something else that makes me hate myself a little bit more. So, when my CBT therapist suggested that we tackle my relationship with food, and that we tackle it as number one item on the list, I was reluctant to say the least. I was there to kick the crap out of OCD, not challenge my addiction to sugar. After all, compared to the ongoing hell of OCD, my fatness is just another drop in the ocean of shit. That’s how I see it anyway. However, when he explained how my relationship with food was affecting my mood (depression), and how this was, in turn, affecting my ability to deal with my own OCD, I began to see how there might be an advantage to tackling the Fat Issue. I was bowled over to hear the words ‘Bulimia’ and ‘Body Dysmorphia’ directed at me.

I challenged the labels on account of the fact that, whilst these are disorders I know very little about, I do know that they can be horrendous and debilitating, just like OCD. It would be insulting to anyone who has ever lived with either of these conditions to count myself among them.  Yes, I have a very unhealthy relationship with food. But, Bulimia? No. I hate myself in many ways, I hate how my face looks and how my body feels but it doesn’t control everything that I do in the way that it would a person with Body Dysmorphia. No. I genuinely do not believe that I fall into these categories. However, I must admit that when my therapist went on to explain how and why he had reached his conclusion, I could kind of see where he was coming from. I had always figured that Bulimia was defined by the act of vomiting, but apparently it is in the act of binge-eating, and by the person’s overall relationship with food – and, in all honesty, my relationship with food is pretty toxic. My homework for that week was to search for books and reading material on binge-eating and Bulimia (Overcoming Binge Eating by Dr Christopher G. Fairburn).

One thing that I do recognise is that my relationship with food and my own body is absolutely affected by my relationship with OCD. When OCD is at its worst, all of the shutters seem to come down, I become more vulnerable, I despise myself that little bit more. When everything seems hopeless, absolutely nothing seems worth it. Getting out of bed doesn’t seem worth it. Making an effort to look relatively normal doesn’t seem worth it, no one wants to see this, I don’t want to see it. Close the curtains and leave me be to eat whatever the hell I want and do nothing at all. Fuck it, if I am fat and disgusting anyway, what’s one more binge going to do? Why on earth shouldn’t I carry on eating myself into a sickly sugar induced stupor? At least then there is a chance that I will fall into a sugary haze that will eventually become sleep. And hey, with sleep – it’s like that Danish dude said – with sleep, what dreams may come…

If just for a while.

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:

 

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.”