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 first experience with OCD?
OCD has been a huge part of my life ever since I was a child. My first memory was having the urge to constantly check whether I had done something despite knowing that I had. This led me into a cycle of frustration, and I would endlessly make sure that I had left things in particular places or unplugged them.
Now, my OCD is linked to work and checking things. I check and re-check machines I’ve set up in the lab, or that I’ve locked a door, and put something in its exact spot. I feel a wave of embarrassment flood through me when my OCD shows at work as I worry people will think I’m ‘crazy’ for doing the same thing multiple times and it may not seem ‘professional’.
My earliest memory was after a fire safety talk in Year 3. We watched a video that shows you how quickly a fire can spread. At the end of the talk, firefighters handed us a safety information leaflet in the shape of a large flame. We were told to go home and stick it on the fridge. I remember putting it in place with a magnet but when I went to let go, I couldn’t. The thought was: “If I let this go in the wrong way, the house will blow up with us inside and it’ll be my fault”. I could see it happening and it was scary. It's not something I’ll ever forget.
It was an intense amount of responsibility to protect the most important person to me, my Mum, and it felt like my world was going to end. So, I held on to the leaflet, counting repeatedly, until it felt safe to let go. I don’t know how long I stood there for.
What was your experience receiving a diagnosis and support?
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.
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.
What does recovery look like for you?
Recovery is different for everyone and is often not a linear process. For me, this journey is more about being happy than anything else.
As cliché as it may sound, it is my belief that recovery is more about progress than perfection. OCD comes with relapses, and I don’t want to put myself in a position where I self-punish for taking a few steps backwards. I completed a course of Compassion-Focused Therapy sessions, and this changed my perspective on things. It’s so easy for us to be kind to someone else but, when it’s us in the hot seat, that’s a different story. I want my heart and my brain to understand that I am a successful scientist despite the fact that I have these mental illnesses. Being successful, happy, and mentally ill does not have to be mutually exclusive.
I manage my symptoms with the tools I’ve been given in therapy so far. One of the hardest issues I’ve found is that compulsions can replace other compulsions that I’ve managed to overcome. It’s so easy to be harsh with yourself if that happens. Relapse does not equal failure though. I love what you’ve said about recovery being more about progress than perfection, and it’s important for anyone in recovery to understand this.
Recovering from OCD isn’t linear. Each day presents new challenges, and as I enter a new chapter of my life as a Mum-to-be, I can see how far I’ve come and I’m proud of myself. I struggle with a mental health disorder but I’m also building my career, sharing my illustrations with thousands of people to spread awareness, and allowing myself to have joyful moments.
So, the one message for my 7-year-old self, frozen with fear standing in front of the fridge, is: feeling responsible for something awful happening if you don't do certain things is exhausting. You’re not weird, you're not strange, you're not responsible, and maybe most importantly, you're not alone.
Have you experienced any cultural issues with your OCD?
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.
How has learning about OCD helped you?
For me, learning about OCD and the science behind the symptoms has helped me separate the condition from who I am. In my first group therapy session, we did this activity that ended with us writing down ‘I am not my OCD’. OCD is debilitating and can be life-threatening, but it’s important to remember that OCD is a diagnosable and treatable medical condition. Last year, I started looking into research surrounding OCD and periods – specifically, how the changing levels of our hormones could play a role in the severity of symptoms. So even my menstrual cycle can be affected by OCD!
Learning about OCD and how it links in with my PTSD was important for me. As a scientist, I like to understand how things work, and the mechanisms behind them. I wanted to get into my biology to understand what was happening to me. This brought me a sense of comfort knowing that my symptoms biologically made sense, even if they didn’t make logical sense to me.