It’s not you, it’s me

OCD can be a very lonely condition as a lot of the churning and writhing goes on in your brain and so unless you vocalise it (or someone notices compulsions) it can go unnoticed for years, even decades in my case. Even people who have known me since childhood would probably say that they thought that some of my behaviour was odd but didn’t realise I was anything other than anxious. As I didn’t know what on earth was wrong with me for a long time, I kept it to myself, like a dirty secret. Even when I found out that what I was suffering from was Obsessive Compulsive Disorder I still lived under the vague illusion that I could control it and that I was just being fastidious in my rituals rather than realising that the compulsions were beyond my control.

Finding out that what I had was OCD was a real game changer for me. I knew what was wrong so I could fight it, right? I found that sometimes even giving something a label doesn’t always affect the way you think about yourself but it did affect the way other people were going to see me. Instead of being ‘quirky’ or ‘unique’ or ‘a bit mad’ (as people had labelled me in the past) I now had a mental health disorder and for some people that can be a big stretch to understand, accept or realise that I can still have a sense of humour about things. I suppose in some ways it is not surprising, if you have always been completely mentally healthy it must be difficult to put yourself in other people’s shoes to that extent. 

When I first decided to just tell people about my OCD, no matter what the situation, I was prepared for people to approach it in different ways. I often get the comment “Oh, your house must be so clean!” or “I’m totally OCD too” which I suppose is a way of trying to relate to the condition based on scenes in the media, books etc but in the same way that being bipolar isn’t just about being high and low, OCD is a complex condition and unfortunately one that it is difficult to convey to people accurately. As a small example, I usually say to people to imagine wondering whether they had locked the door and not only magnify the worry but also imagine that at the same time you are having terrible thoughts and images about the consequences of leaving the door unlocked. Then you go back and check the door but as you are walking away you don’t think you did check it and repeat. There are lots of different aspects of OCD and checking is just one of them and there’s no solid way of making someone feel what it is like even though a lot of people sit somewhere along the OCD spectrum. When checking things, organising things, worrying excessively or having distressing intrusive thoughts etc interferes with your day to day life, it is then time to seek help.

Last year, I had a brain scan done as part of an OCD study at a very reputable organisation and after undergoing some tests (my husband also took part as a control subject) the gentleman in charge of the study sat down with us for about 6 hours and went through the results and showed us the scans, explaining carefully what it meant. These scans confirmed that my brain activity is exactly in line with what has also been seen in other OCD patients and as strange as it sounds, I completely broke down, in relief more than anything else. The reason why I wept was because, at last, I could show my husband and other people exactly what my OCD looks like and the mechanism at which it affects my brain. Before that, it had only been something in my head that I couldn’t visually show to anyone or prove to anyone and that was frustrating as some people can think you are exaggerating or being silly but to have it there on a screen (or a projector in this case) was nothing short of relief for me. 

Since I had my diagnosis and started telling people, many people start to link up my behaviour – such as touching things with tissues or not being able to remove dead flowers from a vase in the office or washing my hands frequently – with my condition. Some people were surprised to realise that on certain occasions though my decisions were odd they later they found out that I made them due to worries of my OCD. A lot of people thought that it was a risk employment wise telling people I had OCD but as a freelance writer working from home, as long as I hit deadlines then my OCD rituals are no business of the outside world (other than my husband).

Over the past few years, as my condition worsened and depression set in I retreated to bed and in the past few years I can probably count on my hands and toes the number of times I have ventured out with friends. When my husband was at work I’ve felt incredibly lonely and more or less lived online and to a greater extent I still am but I’m trying to get back to some sort of normality, which is why I’m writing this now (or obviously when you are reading this I will have already written it so it will be in the past). I often worry that people think my husband is keeping me captive and only allowing me access to the internet as I’ve been so reclusive when I used to be so social and bubbly before. In a lot of ways, I want to be more social but to be honest I’m terrified.

I’m terrified of ridicule of my condition (I can cope with the gentle ribbing I get from my good friends) but it’s the out and out look of disgust on some people’s faces when they see me going through the routine to take my daily medication if I am in a cafe or a shopping centre. If I have to stop and check the floor to make sure that I haven’t stood on a syringe that I am always panicking that I may have stepped on, people look at me baffled and leaving a restaurant table to go to the loo and returning 20 minutes later as I struggled to wash my hands is incredibly hard for me.

I wouldn’t put anyone through OCD, ever. It is like that scene in a Clockwork Orange where Alex is strapped to a chair; eyes lid locked and forced to listen to music while watching terrible images. In my mind, I am Alex, forced to sit through terrible horrifying thoughts as my internal jukebox plays on. I wouldn’t subject anyone to that but I would very much like people to try and understand what it is like and accept the fact that sometimes I’m going to need to check something and you may not understand the reason why.

Sometimes, once you have come to terms with something that may go on for the rest of your life, you have to wait for other people to catch up and I understand that it is difficult for people to grasp if they don’t have it. I’m always open to (sensible) questions about my OCD, I can’t speak for everyone with the condition but I know what goes on in my mind and after discussing it with many mental health professionals, I have a pretty standard OCD way of thinking so you could say that I am normal for the high end of the spectrum of OCD.

I’m used to the condition and other than here I try not to let OCD be me, it is part of me – Fred in his hard hat with his moustache working hard on his Health and Safety criteria in my head – but I try not to let it become me if that makes any sense? My husband has been with me all along the way on my journey from confusion to diagnosis to treatment and he has become something of an expert in OCD himself. 

I don’t expect anyone to fully understand why I am anxious about numerous things but the next time you see someone struggling or having a panic attack or even finding it difficult to cope with depression weighing them down – be more understanding and spread awareness of mental health issues.

So it’s really not you, it is me but if I try to be more understanding of you, will you do the same for me?