“I was very embarrassed by the OCD label, as I’d only seen depictions of it in movies.”

I noticed at about 13 years old that something wasn’t right. But if I look back now, the signs were there earlier too. I noticed that I felt an intense fear, and thoughts that would not subside no matter what I did. I was deathly afraid of germs and I would count every single thing. I was obsessed with counting, and felt like I would be inviting bad things to happen to me if I didn’t count.

I started to hand wash dozens of times in a row. I couldn’t touch a doorknob without using a clean tissue or things other than my hands, the same with any kind of public surface. And the feeling of utter panic was so intense I couldn’t sleep or eat.

As a teenager the symptoms affected school. Some of my compulsions were very noticeable and would seem strange- they only made sense to me. So kids would bully me relentlessly and teachers would make fun of me in front of the class, thinking I was doing something comical.

In relationships I’d struggle to let things go, and I would also end up being gaslit a lot by partners who used my OCD as an excuse to control me, or make fun of me in front of their friends.

At work I would have to try to manage my compulsions, so I’d count even more, which meant I wasn’t focused on the job itself and that got me in a lot of strife. I don’t experience much of this now as I’m open about it and I don’t care if someone sees me carry out compulsions, but as a teen this was a great source of anxiety and depression.

I was struggling and had become suicidal and was self harming (cutting). I somehow managed to get the guts to tell my Mum about the cutting. I handed her the box cutter knife I’d been using, as I wanted to stop.

The doctors were convinced my illnesses were stress-induced (they aren’t, but I was experiencing medical gaslighting as my OCD stems from chronic illness and medical gaslighting itself. So it was all caught up in this ongoing cycle. Frankly I very nearly didn’t survive any of it) so when she told them I’d been cutting they say this as a sign they were correct.

It made my illnesses worse, but the one plus that came out of it is that they immediately recommended both a counsellor and a psychiatrist for me to see in tandem. The psychiatrist diagnosed me on the third appointment and gave me medication to start on, and the counsellor helped me to devise ways to reduce the compulsive aspects and recognise the obsessing cycle (and work through the PTSD, depression and anxiety I was also diagnosed with that came from medical gaslighting too).

The psychiatrist wasn’t great. I felt very much like a problem to be solved. And they offered nothing but meds. The counsellor was fantastic though. Very patient. I had become non-verbal around figures of authority due to medical gaslighting, so the counsellor had a huge job. They let me draw pictures and use dolls in a sandpit to describe my feelings until I felt safe to use words again, which took months. I credit him with much of me being alive today.

I was very embarrassed by the OCD label, as I’d only seen depictions of it in movies and it was always treated terribly and made the patient seem like it was an inconvenience and a choice- which it’s not. So I felt ashamed. I hid that one as much and as often as I could. The other labels I felt ok about, they were easier to explain to people. But largely I kept it to myself. My family supported me but they also thought mental health is a private issue (their own internalised ableism really) so I thought I had to be quiet.

I had one friend who I told it all to. But no one else for many years. It would only come up when my symptoms became obvious to others and they’d say, “What’s wrong with you?” and I would feel compelled to defend myself.

Now it’s the opposite. I tell practically everyone I know and I don’t care at all. I don’t let the labels define me. I know that lived experience is more nuanced than a label can ever be.

A false image of OCD is largely still perpetuated by the mainstream media. And sadly many doctors will often weaponise mental health to make it seem like a patient’s mental health is their own fault, and a cause of many physical conditions. However I feel younger generations are less ableist and biased about it, which is hopeful.

I wish people understood that mental health conditions are just one aspect of who I am as a person. I’m a whole person including these conditions, I’m not a broken person. Mental health is not a subtraction in some equation.

I also urge people to understand that depictions of my conditions in media are often entirely incorrect. Don’t assume you understand what it’s like or how people live with it from the media.