I’ve lived with what I categorised as a child as ‘magical thinking’ for as long as I can remember. When I was a child, I simply thought everyone else’s brain worked the same as mine – it was just that no one talked about it. I didn’t know at the age of eight that what I was actually experiencing were the symptoms of Obsessive Compulsive Disorder (OCD).
It started with a difficult situation at home, after which I developed a fear of contamination and I would feel compelled to repeatedly wash my hands after touching anything that could be perceived as dirty. This escalated to include almost anything, including door handles and even taps in the bathroom.
I had to count everything until the number ‘felt right’. I recall developing a fear of certain words, as if they were imbued with a magical power and they could affect me, and those I cared for, positively and negatively depending on how I looked at them. Words like love, hate, fail, bad, good. I’d often have to read them a certain number of times, or in a certain way either to associate or disassociate myself with them.
“I’m always sad and frustrated to see OCD trivialised because it can be all-consuming and leave you with no quality of life. All we seem to get from the media is the caricaturing and parody of a serious illness.”
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. But while promoting the facts about OCD can help bust the misconceptions around it, what I want to talk about is what it felt like to experience it. AndI can describe this better post therapy, because pre therapy I had no reference point. I’d experienced OCD for so long that I had no memory of living without the effects.
I can now describe it as feeling like I had no ownership of my mind. But for years, from the outside, no one would have guessed. And in my own case, my behaviour – even when diagnosed – was often explained by those around me as something that was easily within my control. In reality, I was just very unwell, and coping with the affects of an illness alone and without support.
Like most people with OCD, I came to realise my obsessional thoughts were irrational, but that did not lessen the impulse to relieve the acute anxiety by performing compulsive behaviours, as well as mental rituals to ‘prevent harm’ happening to me or, more often than not, someone I cared about. Attempting to resist the compulsions resulted in such an overwhelming feeling of anxiety and dread, I felt like I was standing on a cliff edge. I’d break out into a sweat, I’d feel sick and I would shake.
“OCD has nothing to do with pleasure, and everything to do with fear, anxiety and doubt.”
Left untreated, my illness increasingly told me that anxiety lay in every move and every thought – that the world, everyone in it and everything I did was risky, and I needed to manage the constant stream of intrusive thoughts, images and threats by employing a constant series of mantras, mental rituals and physical behaviours. I felt solely responsible for all of this. I felt ‘infected’ with OCD. It came to dominate every action and was present in every breath. It was like dragging a huge chain around with me wherever I went. When I reached the age of 17, I concluded that my life really was not worth living and I desperately wished not to exist anymore.
The turning point came well into my twenties when I found myself in a supportive and trusting relationship. I think I decided finally that enough was enough. We had been together for two years, and I was still terrified to tell my partner about my condition, but somehow I found the courage to do so. And, far from recoiling in horror or running for the hills, he told me that some things about me now made more sense.
“My partner saw it for what it really was – as an illness, not a character flaw.”
He was the first person who knew about it and reacted to me in that way.
At the time we had also recently registered with a new GP. I felt I had a rapport with him and although past experience told me that I could receive another negative response from a health professional, he was incredibly empathetic. For the first time OCD was discussed as an illness and I was treated like someone who deserved help, and who had choices in her care. Within a few months I started Cognitive Behavioural Therapy (CBT).
In my working life I’ve met some challenges that have felt close to the bone or pushed my resilience. As part of my interest in human rights, I’ve visited death row inmates, I’ve worked with families who have lost loved ones to violence, I’ve trained police in restorative justice, and last year I climbed to Everest base camp; but CBT remains the hardest thing I’ve personally ever done. Yet with a good therapist and support from my partner, it was a truly transformative process.
I now have a series of strategies I can employ to keep myself as well as possible. I practice mindfulness and can talk to friends and my partner when I feel I’m slipping. And, whilst in the bleakest of moments I felt like I would have given anything to alleviate the symptoms of my mental illness, I am now less weighted down by the horrible stigma that is associated with it. I know I am entitled to help. I know that what I cope with is an illness, not a weakness. And this, in itself, contributes enormously to my ability to cope.