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From the horse's mouth: “I have OCD”

This month’s interview is with a sufferer of obsessive-compulsive disorder (OCD), who wishes to remain anonymous, and her youth worker. They talk about the young person’s experience with OCD and how they began to overcome it. 

What is OCD?

OCD is an initialism for obsessive-compulsive disorder, a mental illness that focuses around compulsion and control. There are various different strands of OCD. The kind of OCD I have is called contamination OCD, which is around germs, washing my hands, keeping my environment incredibly clean and limiting my exposure to germs. This sort of runs alongside a general anxiety disorder.

How does OCD affect your everyday life?

It’s always there. It’s basically a voice in my head that tells me what to do. I’m aware of things that other people without OCD might not be aware of. I’m aware of all kinds of things that might have germs on them. I’m aware of my body and its proximity to the outside world. If my arm brushed up against the pole on the tube that would be a trigger, and I’d feel like I had germs on my arms. It means my life is limited because I avoid being triggered.

Could you tell the story of how you first became ill with OCD?

I was 16. I had contracted glandular fever, which affected my liver and became viral hepatitis. I had quite a traumatic experience of being rushed to hospital when I already had a bit of a phobia of hospitals. This was in my first week of sixth form. It was stressful because we’d just been told by the teachers that our A levels were really important, and that we should only miss lessons if we were at death’s door.

I was off for about two months, but found that when I tried to go back I was having really bad panic attacks. I was just terrified that I was going to be ill at school. It was really difficult to even get through the gates. Within a few weeks of me finding it difficult to go back into school we decided that I would leave and do A levels via distance learning.

About a month after that I started experiencing the beginnings of the OCD symptoms. It all came from that fear of being ill. I started washing my hands obsessively and showering about five times a day. I would do millions of things that most people don’t do as a way of protecting myself. I had lots of food OCD anxiety. Any food my mum cooked I’d have to reheat again in the microwave to kill off any possible germs.

My bed was my safe space, and no one was allowed to touch it or sit on it. I was only allowed to touch it if I’d put on fresh pyjamas, but I wouldn’t use a towel because I was worried it was dirty. I went to bed sopping wet because that was better than possibly contaminating my body with a towel. I’d wash plates and cutlery, and then sterilise them with boiling water. I had a constant bottle of antibacterial hand gel and would use it after I touched anything, even if I changed the channel on the TV. My hands became so sore and blistered they were always bleeding and scabby.

I lost a lot of weight and became technically ‘underweight’, which is what made the doctors take it more seriously, and fasttracked me into having therapy and antidepressants.

As your youth worker, I remember feeling really helpless at the time. What were the turnaround moments that began to make things better?

Professional help was absolutely key and necessary. I started taking medication and having cognitive behavioural therapy (CBT), which is really good for OCD. Also, my mum was completely there for me in every way. She phoned the doctor every day saying they needed to do something. She knew it wasn’t acceptable for me to live like this. She wanted to help me get better.

Often with these things we’re scared that people aren’t going to like us any more

I think just having safe people around. You always felt like a safe person. Obviously, my mum was too. I could go to the cinema with you, or go out for a coffee with you. These were big things, when a month before I was housebound and couldn’t walk down the road to a shop. CBT teaches you that it’s about building up a resilience to what you’re scared of. So having safe people come with me to do things I was afraid of, but in small, manageable steps, meant that my world started getting bigger again.

What advice would you give youth or children’s workers supporting children or young people with OCD?

I think being around people who have been through similar situations, or other hard times, or have felt completely overwhelmed by the situation they’re in, can take you out of that headspace and gives you a little bit of light and hope.

There’s a lot of support out there for mental illness. I think youth and children’s workers can really help people find and use that support. But I also think just being there. Often with these things we’re scared that people aren’t going to like us any more, or they’re going to abandon us. I think just being there and showing consistency, care and a sense of calm.

Your immediate family are in it with you, so a youth or children’s worker – and this was the case with us – had distance that meant you could be more objective, while incredibly compassionate. But taking me out for coffee or to the cinema was a little bit of respite from a really difficult life. It’s so important to have a bit of light or joy in your day.

Many of us in ministry are aware of different cases of mental illness in our communities, and this is a helpful lens through which to begin to understand OCD. I’m moved by the vulnerability of this young person in describing such a debilitating illness, but also in sharing moments of “light and joy”. 

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