I put out a tweet asking if anyone had any questions about life with OCD. One person asked ‘How do you try and explain it to others? Do you try?’ This is a very good question, not just for people without OCD who are trying to understand, but also for those of us with it who are trying to get that understanding.
Generally speaking I’m a very private person. I don’t really open up very easily and nearly always reply ‘I’m fine’ even if I’m in a bad mood or feeling crappy. It’s not surprising therefore, I don’t talk about my OCD very often. However, it has been necessary to explain it to people closest to me.
The question reminded me of my converswation with my Dad a few weeks ago when he picked me up from the station after my trip of hell to London. He was prompted to talk to me about my OCD following Charles Walker’s open discussion in the Commons about his OCD that week. Dad asked honest and fair questions in an attempt to get a better understanding and find a way of helping me. In return I was trying to be as honest as possible and find ways of explaining what it’s like what I have an ‘episode’. He knows I struggle with things – things that he can’t quite get his head around because he doesn’t see why anyone would worry about them (like most people out there), and he knows I get worked up and anxious, but I don’t think he quite understood how hard and exhausting it can be.
We’ve just enjoyed watching ‘Touch‘ together – the Kiefer Sutherland show about a singler father of an austic boy who doesn’t speak or touch anyone. His only contact is through numbers. In the story someone explains to him that his son is in extreme pain until the sequence of numbers is complete / the problem is solved. I used this to try and explain that the feelings of anxiety and stress I get when I’m in an eposide aren’t superficial, they are deeply rooted and can cause great distress and discomfort. They are physical symptoms and not just thoughts in my head. I think this comparison (though based in fiction) helped him get that more clearly.
When I’m trying to explain my OCD to people it’s mainly about getting them to understand the feelings my body is experiencing, rather than being too specific about incidents. I don’t go ‘I’m throwing away this notebook I’ve spent weeks filling with lovely things, because it’s been in contact with this book, which has a stain that looks like blood on it, and I don’t know if it was there when I got the book or if it’s something I’ve done to put it there and this is causing me great anxiety.’ Instead of specifics I will say what the trigger has been but focus on the feelings I’m going through.
My other useful tool to help describe my OCD is a picture like this:
We’ve all seen it in cartoons, the devil sitting on one shoulder telling you what to do and an angel sitting on the other telling you to do something else. For me, that’s what living with OCD is like. The OCD is the devil, whispering that bad things are going to happen, that things are contaminated and should be thrown away, that I need to scrub my hands clean etc. The angel is my logical brain telling me that the doors are locked, I have checked them already, the gas is off, that the germs will have died off by now.
I also explain that my brain isn’t like everyone elses’ – it can’t filter intrusive thoughts like other people can. A lot of people get bad thoughts but most just brush them away – my brain can’t do that. I have to consciously try and distract myself to move on without worrying. Although there’s no agreement to the cause of OCD, I often liken it to diabetes. A diabetic has problems with the level of insulin their body produces. I explain my body has problems with its amount of serotonin. This is a neurotransmitter that is involved in reducing anxiety through chemical messages. One theory is that people with OCD have less serotonin available, so pills such as selective serotonin reuptake inhibitors help there to be enough serotonin available by preventing its reuptake. This helps reduce anxiety. I’m on these pills and they do help.
Of course it’s important for the people I live with to understand my triggers; and my family do. This is important so they are aware of what might make me struggle and not be surprised if I have a meltdown. But it’s also been important to try and explain the sheer hell of anxiety, panic, fear, that I go through in an episode.
My family get that it’s my OCD and I’m not doing to it out of choice (although when I’m being particularly irratating I think some of them forget). On occasion it has been necessary for me to remind them of the emotional side of what I face day to day. They have a general understanding now of what OCD is and why I do the things I do, though I don’t think it’s complete. I’m not sure that anyone who hasn’t had first hand experience of OCD can 100% understand, but we should never stop trying to improve people’s understanding. With increased understanding should come increased tolerance. If there’s more tolerance around for mental health conditions, people would feel more able to talk about them.