This was the breakthrough moment. For the first time I felt at ease, a man walking out of prison, wondering what was next.
I spent years suffering in silence. How could something so big be so easy to hide? Was it the guilt, the shame or merely not knowing the true extent of what was going on? Was it the fear of being labeled, or was it thinking that this was a natural part of “growing up”? What ever it was, obsessive-compulsive disorder has had a profound impact on my life, muffling my school grades, discontinuing my social life and even forcing me to drop out of university.
One of the ways in which my OCD manifests itself is through the fear of being contaminated by germs, where actions such as touching an item belonging to someone else, would lead to obsessive thoughts of myself coming to harm.
But that wasn’t it. The torment of my OCD is constant, with a barrage of intrusive thoughts and vivid imagery with a violent or sexual nature.
Such was the distress caused I would spend hours bowing to my compulsions of ritualised washing in the bathroom. So strong was the fear, for a period of time I confined myself within the four walls of my room to avoid any contact with the outside world. And such was the fear of being stigmatised and the trivilasation of OCD it led me to hide my debilitating illness.
Now, I find myself breaking the silence so others don’t have to suffer like I did.
These are the “Extracts” of my life.
The beginning: As a 14 year old, I had no idea what a mental illness was, how to tell if I had a mental illness or where to get help?
I first started to develop symptoms of OCD when I was 14. To me, it doesn’t matter what triggered it. What does matter is knowing that it’s not your fault – there isn’t a known cause for OCD, a formula that says you will get OCD. OCD can affect anyone indifferent to the background you hail from.
I also know that it didn’t have to get as bad as it did before I went to get help but as a 14 year old, I had no idea what a mental illness was, how to tell if I had a mental illness or where to get help? Education on mental health at school would’ve helped but instead, I found my compulsions slowly taking over my life. I would come home from school, throw my clothes in the wash and spend endless hours in the bathroom. My school work suffered, not being able to concentrate due to the fear of contamination and not being able to touch any of my school equipment at home. I eventually dropped out of school, becoming ever increasingly housebound. I lost all my friends, becoming ever increasingly isolated. Even when my head of year was kind enough to chase me up, I did not tell him the truth, just in case I was branded as weird.
Looking back now I had many opportunities to get help, but I was never quite brave enough nor did I get the support that I needed. In fact, at times, I had to take a lot of unnecessary stick for keeping it a secret. I had to grovel to get back into school after I had dropped out and honestly it made me feel like sh*t.
Somehow, perhaps through sheer determination, strength, resilience and faith I found a way to get by. And off I went to my second choice university.
Advice: Worried you might have OCD? Have a look at this quiz on the OCD action website.
University: “Taking exams was hard enough, but having to deal with intrusive thoughts whilst doing a complex math’s problem added another dimension.”
Violently mugged in fresher’s week, it was here where things got worse as I became unable to leave my room. I had reached my lowest. It was during this time, that I started experience suicidal thoughts. Only then, when in “crises”, did I go seek help. Browsing the internet, only then did I discover I might have had OCD.
Luckily for me, the university had a great, quite easily accessible, counseling service. Although it wasn’t treatment for my OCD, it was exactly what I needed at the time. Together, with my counselor, we came up with a plan of action, a sabbatical from university and for me to see my GP back at home.
University the second time round, after having treatment and reapplying through UCAS, explaining that OCD had hindered my grades, I was accepted to my first choice university. I was a lot more prepared and managed to come away with a first! You can have OCD and still succeed!
It wasn’t easy and I wasn’t always at 100% but that was as much to do with depression as well as my OCD. It’s often these two go hand in hand, but I was supported by my disability service at university, and again through counseling as well as being blessed with a great friendship group.
Taking exams was hard enough, but having to deal with intrusive thoughts whilst doing a complex math’s problem added another dimension. Rest breaks, and extra allotted time for the time I lost with intrusive thoughts, thanks to the disability service, meant that I was less disadvantaged by my OCD.
I did have a few relapses during university but on the most part, my department was very understanding, but one of my GPs on the other hand…
Advice: Sign up to the disability service at your university, and let your department know about your circumstances. Use the counseling service provided at your university if you have nowhere else to go.
My GPs and I: GPs are like jellybeans; some taste fruity and others taste like vomit.
There is an icebreaker I used as a volunteer, when talking at GP event. It went something like this:
Write a secret that you wouldn’t want other people finding out on a piece of paper and seal it in an envelope. Now, pass that envelope onto the person on your left. How do you feel? Nervous? Anxious? Scared? Well going to the GP to talk about your mental health is exactly like that.
How many times did I have to visit my GP before I was diagnosed? 4 or 5 times and often I didn’t think my GP at the time fully understood the extent of my condition. I was treated for my hands because of excessive washing but nothing more was made of it. Another time, he recommended a self-help book giving me a piece of paper with a list of books. At the time I couldn’t bring anything from the outside world into my home so I threw it away. Another time, he suggested seeing my GP at university but the thing is, I couldn’t register at the practice because my OCD made it difficult to fill in the appropriate forms.
But look, don’t stop this going to your GP. GPs are like jellybeans; some taste fruity and others taste like vomit, but take this GP information card with you and don’t be afraid to seek a second opinion.
My GP, at university was great, very supportive and I built up a great rapport with him, but he wasn’t always working.
On one occasion I had to see another GP when I was struggling with my OCD and depression, which was severely affecting my ability to work, but instead of helping me, he misconstrued my struggles as me trying to find a cheap excuse. He actually told me “you’re 24, you should know when to get help” – it is actually that attitude that stops me from going to get help in the first place. After this, I was hysterical, curled up in the corner of my room and balled my eyes out. I’m so grateful to the friend who came over to comfort me.
I also find that it often feels like the GP is trying to rush you out the door. Ten minutes is too short to speak about your mental health problems, especially if you’re opening up for the first time. Did you know you could double book slots?
Recovery: This was the breakthrough moment. For the first time I felt at ease, a man walking out of prison, wondering what was next.
After waiting several years to seek help, I had to wait another few months to receive cognitive behavioral therapy (CBT) – aiming “to help a person learn to change the way they think and act”. It changed my life. Exposure response prevention, facing my fears & not performing my compulsions, watching the anxiety rise and eventually fall, realising that I did not come to any harm and working towards a pyramid of goals, was a key part to this.
I recall, after making headway with some of the smaller tasks on my pyramid, my therapist, taking me to a video games store and challenging me, quite bizarrely to lick one of the games. Ingesting the germs, I had a real sense of fear that I would get HIV unless I washed immediately, but I was preventing from washing. Instead, I went to take a HIV test. It came back negative. This was the breakthrough moment. For the first time I felt at ease, a man walking out of prison, wondering what was next and over the following year I worked hard to lessen my compulsions until I was living a relatively normal life (whatever that means). I still have to deal with the intrusive thoughts, but I feel I am in a place where I can challenge this.
CBT has a great success rate but it doesn’t work for everyone, however do check you are getting the right treatment. I’m no expert, but I avoided medicine as I hated the idea of it, but that doesn’t mean it can’t be used with your treatment. However I don’t see it as a long-term solution.
Advice: Make sure you getting the correct CBT treatment. Here’s a CBT checklist to help you out.
Debt: Avoidance became every part of my life.
My OCD has got me into some dire situations and just like a bad habit, avoidance became every part of my life.
When I left university there was the matter of informing my halls that I was leaving, but it meant completing all sorts of forms by hand. I was unable to do so because of my OCD, so I just sent them an email and put it to bed. I ignored this for a long time, thinking about why I was being punished for having OCD, and when avoidance no longer became an option, I found myself in debt.
“Advocacy is about exploring options, securing rights, and enabling people to take the opportunity to regain power and control over their lives.”
I’d wish I had known about advocacy back then. It would have saved me a lot of trouble and helped me deal with a lot of things. OCD affects life in many different ways and to my annoyance, although I consider myself recovered, it seems to be trying to hold me back.
Advice: Learn more about advocacy here.
A BME perspective: An openness to speak about mental health would have made my life a lot easier and this extends beyond the BME community.
Mental health in the BME community is a difficult subject. It’s a taboo. I found it hard to speak to my parents about my OCD, in fact I still do.
The stigma attached to mental health makes it difficult not just for those experiencing a mental illness, but also for those who care or support someone experiencing a mental illness.
I live in a culture where pride seems to be first and foremost, where upholding an “image” comes first. Where only the positives, are spoken about. Where my son got straight A’s, not that he struggles with depression, and where my daughter is a lawyer, not that she struggles with anxiety.
An openness to speak about mental health would have made my life a lot easier and this extends beyond the BME community.
Advice: If you can’t speak to your family please make sure you have someone to talk to. Opening up to my friends was the best thing I ever did. If you feel you can’t have a look at OCD Action’s helpline. The best way to overcome stigma is to talk about mental health.
Finally I was asked the other day if I had the choice of getting rid of my OCD, would I?
I want to be free from OCD. But I wouldn’t take away the experiences from it.
All the best,
Petition to get mental health education on the national curriculum: https://petition.parliament.uk/petitions/104545