November 1st 2016
Coming clean: why we need to talk about OCD
October 10th 2016
Gemma Painter has suffered from Obsessive Compulsive Disorder since the age of nine. It took her more than 20 years to seek help. In this moving and honest account of living with the condition, she aims to open up the conversation about this secretive and poorly understood illness
I have OCD. That’s a big thing for me to say. In fact, it’s a HUGE thing for me to say. Never, ever, in more than 25 years, did I think I would be able to say that - not publicly anyway. But now I’ve said it and it feels good, like an enormous weight has lifted and been released into the air.
The reason I am coming clean now, is that I’m frustrated by the type of mental health talk that is (or rather, isn’t) going on around Obsessive Compulsive Disorder. Depression and anxiety seem to be popular stories right now, but why is there such a glaring lack of dialogue around the more specific - and often harmful - forms of anxiety, such as OCD (other than when people joke that they are "so OCD". They don't know the half of it). Untreated, it can cause long-term damage for those affected.
OCD is a severe anxiety disorder affecting 12 in every 1000 people, young and old. According to the charity OCD-UK, it can be so debilitating and disabling that the World Health Organisation (WHO) has ranked OCD in the top ten of the most disabling illnesses of any kind, in terms of lost earnings and diminished quality of life.
I first noticed something was different around the age eight or nine, when I contracted gastroenteritis. It was awful; I was in a lot of pain and I hated being sick – so much so that I became terrified of food and couldn’t eat. I feared that anything I ate would have germs on and make me sick; I felt ill at the prospect of having to put food in my mouth. Thankfully, I quickly overcame it, but a few months later, I moved schools and was with children who were quite socially deprived. The other kids in the class would say that these children were "smelly" and told me that I was not to touch anything the "smelly children" came into contact with, otherwise I would catch their ‘germs’. That thought about germs never, ever left me; I am now 35.
I confided in my mum once or twice when things were really getting me down, but for the most part, I tried to hide it as best I could. I thought my OCD meant I was broken, that somehow I wasn’t made properly. For the best part of 20 years, I felt utterly ashamed of myself and entirely alone. I know now through therapy, that this, of course, is not true. But because no one ever really talks about OCD, I’m haunted by the certainty that there are other sufferers who believe that OCD is something to deal with alone, rather than an issue that can be shared and even turned around.
OCD is suffered by people who obsessively worry about something (they literally can’t think about anything else) and can only eliminate that worry by compulsively carrying out actions to remove, or at the very least reduce, the ‘problem’. My OCD manifests itself in an obsession about cleanliness, being clean from all human (and sometimes animal) bodily secretions - ‘contaminants’ as they are known professionally. These can be anything from sweat, urine, dead skin and hair to saliva, faeces and vomit – anything generated by people outside my own body that is regarded as unsanitary or can smell ‘bad’.
You might think, "well how often does a person come into contact with that?". In my head, it’s every single moment of every single day, because if the ‘contaminated’ person or product comes into contact with something else, then that product or person also becomes contaminated - and so the cycle continues. Eventually, everything touched by human beings becomes contaminated in some way and this generates the need for excessive cleaning. I will clean anything and everything, even if it means ruining or breaking something – I have gotten through a lot of iPhones, for example.
An obsession with cleanliness is one common trait of OCD, but there are many other forms of obsession: being scared of contracting life-threating illnesses such as HIV or cancer, worrying about losing control and killing someone, believing that you have acted badly in the eyes of God, or fearing the house will go up in flames while you are out. Compulsions vary too and often take the form of a ritual - doing the same thing over and over again until the situation is diffused or eliminated. Repeatedly touching or moving something (such as the switch on a kitchen hob or the key in the lock when you close the door), praying and cleaning are all examples of what a sufferer might do to alleviate a mental irritation. In some cases, depending on the severity of the illness, this can lead to harming yourself in other ways, and quite often for me the harm is physical. I sometimes clean so much that the backs of my hands turn red raw and bleed, but I accept the pain as punishment for allowing the obsessions to take control of me. Last week, I cleaned all my boyfriend’s belongings because we were moving in together; I cleaned so much that the skin on my fingertips dried and cracked and I couldn't log into my phone with my fingerprint - a First World problem, granted, but upsetting for me because it was physical evidence of the crazy behaviour I was allowing myself to carry out. Thankfully though, I only use gentle cleaning agents and a huge number of baby wipes, but I have heard of people using bleach which has ruined their skin - and no doubt many of their belongings.
OCD can not only damage you and your body, but it can affect you socially, financially and mentally as well as affecting your relationships with family and friends. A few years ago, I was living in a flat where my housemate was barely around at weekends, which meant I could hide my illness and spend the entire weekend cleaning in secret. I calculated that in 52 consecutive weeks, I did not go out on a single Saturday evening. My illness was so severe that I could think of nothing beyond being able to dedicate my whole weekend to cleaning and creating the euphoria that I felt when everything was clean. That was an incredibly lonely time in my life. At the same time, I spent nearly all of my twenties in huge amounts of debt because I spent so much money on cleaning products and avoiding low-cost rental situations where I couldn’t hide my compulsions and maintain a ‘clean’ and ‘happy’ lifestyle.
It was so severe that I could never afford to go out – even to do the simplest thing such as go to the cinema. I never once went on holiday. OCD has also put a huge strain on the people I love. I can’t count the number of times I have turned down a social invite (and then been faced with a lot of unanswerable questions) or allowed my condition to take precedence over my relationship with other people. Very often, I have ended up in huge rows or driven those close to me to tears (mostly my mum and boyfriend). It hurts them seeing me treat myself in such an incomprehensible and self-destructive way – never mind how much I hurt them by not seeing them, not allowing them to visit my flat or not allowing them to even touch me. The problem is, cleaning and striving to stay clean makes sense to me and I can’t understand why no-one else can see the need or have the desire to be clean.
Fortunately for sufferers like me, there are organisations which can help – from online forums and group meetings, to one-to-one therapy with specially trained psychologists. It has been a very long and winding road for me to get the right treatment. I first sought help 20 years after my first memories of falling ill. There were times when treatment made things worse rather than better - largely because our health system is not sufficiently geared up to tackle such a complex and enduring problem effectively.
After plucking up the courage to go to some group meetings, which I found on the OCD Action charity's website and which were hosted by a volunteer near work, I found people who had all been through similar experiences in trying to find the right therapy. The collective view was that persistence was the key. Last year, after several attempts, I finally found a junior psychologist via my local NHS Primary Care Trust who turned my life around. Here, I underwent Cognitive Behavioural Therapy (CBT) which really worked. The improvement I saw - being able to tackle everyday situations such as dropping something on the floor and picking it up again without washing it - meant that last week I was finally able to move in with my boyfriend of six-and-a-half years. I am extremely happy, but I would be lying if I said it was easy. In fact, it’s the hardest thing I have ever had to do – having to share and hand over control of your personal environment that you have protected for so long, is hugely difficult. But I know that if I can’t live with another person, a person I really love, then I will have no life to live.
I never, ever thought I would be able to get better. After 25 years of suffering with OCD, I have learned that I can. But I also know that we can't improve things if sufferers like me keep everything about their condition in the dark. OCD is a serious illness with serious consequences and it's only by having these conversations that we are able to support those who have it - and make it an illness not to be ashamed of. If it’s OK to be anxious and run out of a meeting, then it’s OK to want to switch the kitchen light on and off 20 times before you leave the house. It's also OK talk about it and find support to help you get better.
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