We’ve all been there. A friend or acquaintance with a vague awareness of your OCD asks you to explain it in a bit more detail. If, like me, you have been explaining it for many years, you probably have a ‘stock answer’ – a brief outline of what your OCD is and how it manifests. You include certain carefully selected words that you feel best represent what is happening to you and you lay it out as clearly as you can. For me, I’m always happy to discuss it – I think it’s important that people ask when they feel they don’t know enough about it, because this is how we promote awareness and combat stigma. However, I recently came to understand that I have been unwittingly contributing to that lack of understanding by choosing the wrong words.

OCD is one of those mental health issues that come with preconceived notions already attached. Many people assume it means my cupboards will be stocked with neatly aligned tin cans, all facing forward. Surely, all my bathroom towels will be exactly level on the rail, and my books and DVDs will be in perfect alphabetical order. In reality, my house is generally untidy, and I couldn’t tell you where half my books or DVDs are. While it manifests a certain way for some people, it doesn’t for me. Furthermore, it works in a millions different ways for millions of different people – and that’s why I’m always happy for people to ask.

If somebody is aware of my OCD, they are often surprised to find that my house is untidy – which demonstrates the extent to which that misperception reaches. Once that surprise has subsided, many expect me to need them to undergo drastic disinfection or the like before they cross my threshold. The surprise returns when they find that this is not the case. This is my own fault, though, because, in explaining the crux of my issue, for years I have been using the term “contamination”. To me, it makes perfect sense, but to others that are unaffected by any kind of OCD, I now see that it is somewhat misleading. It suggests a fear of germs, and a need to keep my surroundings sterile. This is not what OCD is for me.

In using the word “contamination” to describe my main OCD trigger, the contamination in question is a contamination of my personal bubble by the outside world. People understand that I have an irrational fear of shoes, and this fits with my misleading use of the term “contamination”. Shoes are covered in germs, surely, so that makes perfect sense. When I touch shoes, I wash my hands, and I don’t allow shoes past the hallway of my home. But germs are not a factor – I dislike shoes because they are, symbolically, the item that crosses the threshold.

To explain it properly, imagine that my home is my personal bubble. It is my safe zone. Everything in it is safe. It may be untidy, and chaotic, but it is safe. When shoes cross the threshold – whoever they belong to – they contaminate my bubble. They bring the outside world in. In my sicker days, I was also unable to cope with trousers, since they touched the shoes that touched the outside world. Now, I can rationalise that away, and deal with my dislike of shoes – it is something that is generally under control. However, as the problem is keeping the outside world out of my safe bubble, anything that comes into it that doesn’t belong is problematic and triggering for me.

Despite my dislike of contamination of my safe bubble, I am not agoraphobic. When I leave my safe bubble, I consider my personal space to be my safe bubble – which is why I am wary of what I touch, and what touches me. It’s also why staying home is the easiest option – I am able to deal with the outside world when necessary, but it’s exhausting. This type of “contamination” also manifests in my obsessive checking of doors and windows. When I repeatedly make my rounds, I am securing my safe zone.

But the frenzied hand-washing is about germs, surely? I can see how it would seem that way. When my safe zone has been “contaminated”, my response is always to clean it. This is not about germs, however, it’s just a symbolic way of restoring my safe zone to the way I need it to be.  I am ridding it of the outside world – not of germs.

So, I am left with the question, how should I explain my OCD? It’s important to do, but it’s also important to choose the right words. Perhaps I should simply say I am “maintaining my bubble”, since that suggests my compulsions are the coping mechanisms that they actually are, rather than the fearful actions suggested by efforts to avoid “contamination”. I’ll just have to try it on for size.