Words matter

by Jemma

This story is part of our blog series called “Stories from the OCD Community.”  Stories from the community are submitted and edited by Toni Palombi. If you are interested in sharing your story you can view submission details at www.iocdf.org/ocd-stories.

I have obsessive compulsive disorder (OCD). Sometimes this term can be used flippantly and incorrectly, such as: “My wardrobe is organised by colour – I’m so OCD”. Unfortunately, these comments can cause pain for those living with OCD.

Obsessions are unwanted, intrusive thoughts, images or urges that are extremely distressing (iocdf.org). This differs vastly from the person who likes to colour code all the items in their wardrobe because it is visually appealing to them. Compulsions are repetitive behaviours or thoughts that a person uses to neutralise, counteract or make their obsessions go away (iocdf.org). People with OCD don’t want to have to perform their compulsions. They don’t want a life controlled by the often highly complex rituals they feel they must perform to neutralise the obsessions.

Imagine your body being in a constant state of fight or flight because your amygdala is continually firing and misinterpreting ‘safe’ things as dangerous and non-threatening stimuli as threatening.

OCD is neither a quirk nor a joke.

When I was diagnosed — at the age of 30 — I had very poor insight. I was unwell and life wasn’t pleasant for my husband and children (6 months and 2 years at the time). The nature of my obsessions and compulsions meant that I couldn’t see what was real and what wasn’t despite being a relatively intelligent and rational person. I lived in constant, debilitating fear of what would happen if I didn’t perform my compulsions. At that time, I was losing 6-8 hours a day to the obsessions and compulsions. It was all consuming. I was barely ‘present’ for my kids and felt that I had missed so much. Plagued by terrifying nightmares, I dreaded falling asleep.

My situation has since improved with medication, exposure and response prevention (ERP) therapy, and lots of hard work. ERP has been the hardest thing I have ever done; however, the results have been positive. My insight has improved, and the time spent on compulsions has decreased. I understand I will always have to work hard to maintain my health and fight OCD.

I am terrified that one of my kids will develop OCD given the hereditary nature of the disorder. I will continue to learn as much as I can about OCD so I can support them should it be necessary. If they do develop OCD, I want to ensure it is diagnosed as early as possible so they can receive the help they need. I do not want them to live with undiagnosed OCD for 20 years like I did.

I will also commit to being brave enough to request that people do not trivialise OCD and to educate themselves about the disorder. If people understood the debilitating nature of OCD and the number of people who lose their lives to this disorder, maybe, just maybe, they’d start thinking about the language they use. Because it does matter.

Jemma has a very supportive husband and two very cute children. She works for the government and is looking forward to building her first family home.