OCD and me: Ellie and Sabrina share their different experiences

Obsessive-compulsive disorder (OCD) is a mental health condition in which an individual experiences thoughts known as obsessions leading them to enact particular behaviours called compulsions.  

This is often portrayed as someone who frequently washes their hands (compulsions) due to a fear of catching an illness (obsession). However, OCD can look vastly different between different people. Not only does this mental illness come with its own struggles, other factors such as culture, gender and even age can bring their own challenges.  

In this article, one of our Lived Experience Editors, Ellie, chats to Sabrina, a fellow OCD sufferer and artist, about her experience with the disorder as a Black British Jamaican woman. The illustrations in this blog are taken from her Instagram where she talks about her own experiences and advocates for the destigmatisation of OCD.

What was your experience receiving a diagnosis and support? 

Ellie

I understand what you mean. Even now working in a research lab I find myself having an indescribable level of responsibility I might do something wrong and ruin the experiment. The guilt that I feel when I don’t quadruple-check something swallows me up from the inside. No matter how many times I check it, I’ll never be satisfied. This is what drove me to receive support. 

Going to the doctors, I wasn’t as nervous as I thought. I already had a diagnosis of PTSD so I was familiar with services. I received my diagnosis easily and my doctor was confident I have OCD. I later found out that it’s common to have PTSD and OCD together, which made me more confident that my feelings made sense. I don’t receive any OCD-specific support currently, but it is hoped that by improving my PTSD symptoms my OCD will also improve.

Sabrina

By 2013, it was so out of control. This thing I had no name for had taken control of my life. Eating, drinking, chores, leaving the house, meeting deadlines, washing my hair, my period, texting, writing, and even something as simple as walking in a straight line to the shops. It was impacting pretty much every minute of my day. Some days, the only time I could get any peace was when I was asleep and, on the very worst days, it would infiltrate my dreams. 

I knew I needed to tell someone but how do you verbalise your innermost fears and explain the reasons why you feel the need to write and delete a text message repeatedly a certain number of times or hold on to the bedroom door handle while counting until it feels safe enough to stop. The first time I’d gone to the doctor was discouraging. I had no name for the things I did but I knew I didn’t feel right. I knew what depression was because we’d talked about it at college, so it felt easier to speak about that instead. I was instantly dismissed as a young teenage girl worrying over nothing. I was told by a GP that I was “a little bit sad”. It made me not want to talk about anything further.  

I relate to what you’ve said about the ease of receiving a diagnosis because when I eventually went back, with my Mum and all the notes I’d made, the GP referred me the same day. For me, the hardest part was getting the courage to seek help. I knew I needed and wanted the help because no matter how many times I checked, tapped, or went over something, it wasn’t enough.  

After a long wait, I finally started Group Cognitive Behavioural Therapy. For the first time, I was in a space where I didn’t feel weird or embarrassed by my thoughts - which we came to refer to as intrusive thoughts. I didn’t feel weird or embarrassed about the things I did - which we came to refer to as compulsions or rituals. For so long I’d hidden my OCD and now I was able to connect with this group of people every week. It was a relief. I didn’t feel as alone. 

Have you experienced any cultural issues with your OCD? 

Sabrina 

There’s this unspoken rule that you should be cautious of revealing too much to medical professionals as a Black person with a mental health condition. All those years ago when I wanted help, I was terrified because what if I said too much and they thought I was dangerous and locked me up - not just because of the intrusive thoughts but because of how I looked as someone with these intrusive thoughts. It all ties in with the stigma and inaccuracies surrounding the disorder.  

I see now that this barrier played a key role in me keeping it to myself for so long. My Mum was worried about me saying too much. A conversation I had earlier this month with another Black woman with OCD briefly touched on the same thing. Now I know differently but there’s always a part of me that might be cautious about saying too much. I can’t speak for all Black people living with OCD but, from the handful that I know, we’ve all said that this is a collective fear.  

My cultural experiences have played a part in how the obsessive-compulsive symptoms manifested too. Superstitions, folklore, and omens go hand in hand with many parts of Jamaican culture. I grew up hearing things like ‘don’t point with your finger in a cemetery because if you do you need to bite your finger or something bad will happen’, or ‘don’t put shoes or a hat on the bed because something bad will happen’. They’re beliefs rooted in fear, and it ties in with Jamaica’s history. I can only speak from my personal experiences but, I would say that my cultural experiences in this area have had an effect.