I remember it vividly, the leaflet lying on top of a pile of papers in the music room. Signs and symptoms of Meningitis in children, a starkly graphic picture of septic rash and how to glass test for it on the back page. I must have been about 7 or 8 and I don’t think I fully understood what I was seeing, only that it left me feeling incredibly uneasy.
Fast forward a few years to 13 year old me, bending down to get some jeans out of the drawer in the dresser, when an unfamiliar pain radiated around the front of my head. It was probably just a headache or head rush, but I remember panicking, “this is it, I’ve got meningitis and I’m going to die!”. I probably hadn’t thought about that leaflet in years, but there I was, trawling through the details I could remember, trying to work out what other signs or symptoms I needed to look out for. So, it began, my first encounter with OCD. What followed was years of checking. Worrying about every headache turned into checking my legs and arms daily, every time I got dressed or went to the loo, for signs of the dreaded “Meningitis Rash”. No sign meant that I was ok for today, I wasn’t going to die today.
I think the meningitis obsession lasted for the best part of my teenage years. I had an incredibly happy upbringing, in some ways it was probably quite sheltered. To me, meningitis was probably the worst and most terrifying thing that could happen to a person.
That was the case, at least, until I went to university. That’s when I encountered the inevitable discussions about STI’s. Quite quickly meningitis took a back seat and AIDS became star of the show. I don’t think I ever acknowledged at this point that my anxieties about contracting an STI were irrational, or even slightly out of the ordinary. Everyone sat up until the early hours, frantically googling signs and symptoms and finding out if routine blood tests picked up STI’s, didn’t they?
That one really stuck with me though, even when I was crippled by the most agonising intrusive thoughts (we’ll get to those in a bit). I never identified my worries about having contracted HIV as being related to the other, more torturous thoughts. They were, of course, and equally as ridiculous and unfounded. That one was recently put to bed, when I had to have a HIV test prior to moving to New Zealand. I was a nervous wreck waiting for the results to come back, completely convinced that I had somehow given HIV to my lovely partner and that my whole world was about to come crashing down around me. It was negative, of course.
I’d say that I really noticed that there was something “wrong” when I was in my third year at Uni. I was on placement in rural Scotland. It was the middle of January, and as you’ll know if you’ve ever been to Scotland in the winter, it never gets properly light. That year had been challenging, I was in a relationship that was toxic, I’d had some horrific news regarding the relationship, and I was doing pretty awfully at my studies, probably as a result of depression related to all of the above. My placement was in a secure psychiatric unit, and I was staying away from halls in a bizarre little B&B, who’s 70’s décor may have been charming when in a brighter mood, but to me was cloying and oppressive. I was about a week into placement and the intrusive thoughts hit me like a bus. I was in the car with my supervisor, driving to a community visit, and it popped into my head as casually as one might think about what to have for dinner. “What if I grabbed the steering wheel and drove us off the road?”. It horrified me, it stopped me in my tracks, and I grappled with it for the rest of the day. “What if I was an awful person? Why did I think that? Am I like the patients on the ward? Am I going to lose control and harm someone in some way?”. Safe to say, every car journey that followed left me sick with terror inside, because what if I acted on the terrible thought? I sat on my hands and plastered on a smile to pretend I was fine.
It was about 4 weeks into that placement that I was standing on the platform of the station, waiting for my connection back up to Uni for the weekend. I was exhausted and a bag of nerves from weeks of these intrusive thoughts, sleepless nights and panic attacks. A high-speed train rocketed through the station and the thought popped into my head “What if you jumped in front of that train?”. A silent panic attack ensued, as I tried to rationalise with myself that I didn’t really want to commit suicide, so why on earth was I having these thoughts?
That weekend I packed my bags, explained to Uni that I wasn’t well and got the train home to Mum and Dad.
At home things got worse. There had been huge national news coverage about a little girl who had been abducted, suspected murdered. It was local to my hometown and everyone was in shock. I went to bed one night, not long after I had arrived home, I was about to drift off to sleep and the thought crept into my mind. “What if it was you who killed her, and you just don’t remember doing it?”. The terror engulfed me. “You couldn’t possibly have done it, you were away in Uni. You would remember that. You know you didn’t. You’re not a bad person. YOU’RE NOT A BAD PERSON”.
This carried on for days and I existed in a fog of intrusive thoughts, checking the news to see that I hadn’t somehow been implicated, avoiding getting into the car so that I didn’t act on that thought and harm my family, and pretending that I was ok to the outside world. Uni asked for a sick note to sign me off placement, so I went to the doctor. I think he could see instantly that I was anxious and exhausted, but I was far too ashamed of the content of my thoughts to tell him what was really going on. They section people for those sorts of things, don’t they? So, I told him that I was anxious about Uni and had been feeling down, I mentioned the panic attacks, but I didn’t tell him why I was having them. He suggested to me that I might have Generalised Anxiety Disorder, and prescribed me a course of exercise, sleep and trying to do things that I enjoy. He told me to come back if I didn’t see any improvement.
You know, for a while it did get better. I ended the toxic relationship, I started running and my sister entered me into a half marathon. I noticed the thoughts seemed to have less power when I was well rested and spending time with my friends. I got back on track with my studies after taking a year to catch up and resit the assignments that I had failed, redid my placement and had the best time working in the mental health sector. I started to feel a bit better about myself, I had a focus and I was optimistic.
The thoughts started to creep back as I went into my final year. I had another placement, this time in child and adolescent mental health. It started well, and then I had to do a course on safeguarding children. This must have coincided with the huge amount of news coverage of child abuse scandals in the BBC and the church, police uncovering paedophile rings all over the country and my finding out that somebody we had gone to university with had been convicted of child abuse. My happy little bubble of naivety had been unceremoniously burst in this respect a couple of years earlier, when I found out the earth-shattering news that my boyfriend at the time was a convicted sex offender. Needless to say, between the course, the news coverage and personal events, it felt to me like child abuse was around every corner. OCD has a knack of targeting you at your most vulnerable point, and this was clearly a trigger for me. I vividly remember the first intrusive thought, whilst watching some silly romantic comedy, in my flat, and a child came on screen. “What if you’re a paedophile?”. It left me reeling and made me feel physically sick. Then the ruminations started. “You know you’re not, don’t be ridiculous. You’d never harm a child. The thought repulses you, you couldn’t be like that”. “But what if you are? How would you know?”. There’s a reason they call OCD the doubting disease. You can reason your whole day away, until you’re blue in the face, and it’ll still come back to you with that question of doubt. “But, how do you know?”.
This one spiralled, more than the others. From that day onward I avoided any news articles or TV shows that might contain the words “paedophile” or “child abuse”. Again, I ended up not completing the placement because I became so consumed with anxiety around harming a child and didn’t have enough support from my educators, so I was on my own with my thoughts most of the time. I buried myself in my studies and used them as a distraction to fill my mind with anything but the constant barrage of rumination. I couldn’t speak about this one. It was too horrifying. Paint on a smile and carry on.
When I completed Uni and started my first job, I thought I might have kicked it, but it came back. I altered my commute to work so that I didn’t pass any schools, I avoided watching any TV programmes that had children in them and panicked when I couldn’t. I panicked about situations where I might be left alone with children and avoided them at all costs. Other thoughts started to join back in too. “What if I’ve left the door open and somebody robs the house?”. I’d have to go and check the front door three or four times before leaving for work, often driving away and then turning round to come back and check again a number of times. the other thoughts got worse too. “What if I sleepwalk and kill my boyfriend? What if I commit some horrible crime and end up in jail? What if I am a fraud and get exposed in work?”. “You know you won’t do that, but shut the kitchen door at night, just in case you sleepwalk and get a knife. You’re not a criminal. You know you’ve done nothing wrong. But what if you have? What if you are a bad person?” “YOU’RE NOT A BAD PERSON!!!” “…but how do you know?”.
I continued to function at work, just. I did my job each day, dreading the time when I’d have to get into the car and drive home, knowing the thoughts would come back with nothing else there to distract me. It got to the point that I couldn’t hide it anymore and my boyfriend noticed my constant anxiety and exhaustion. I broke down to him and explained to him most of what was going on, it felt freeing vocalising it to someone else. He didn’t reject me! He didn’t get me locked up! I didn’t use the word “paedophile” though, I thought he’d definitely reject me if he knew that. He spoke to my mum and decided he would take me to the doctor. I explained as much as I could to the doctor, again without being specific because I was still terrified that he would section me if I spoke about what was really going on in my head. I really should have told him. He prescribed me some antidepressants, and counselling. The antidepressants worked to an extent, and the anxiety related to the thoughts was reduced enough that I was able to plod onwards and distance myself from it for a while. Unfortunately, the counsellor, though well intentioned, wasn’t very helpful.
It’s probably worth mentioning at this point that I still had no idea that what I was experiencing was OCD. This all changed quite suddenly, it was between counselling sessions and I was browsing some of the resources my counsellor had given me and I came across a link to an article on OCD, more specifically an experience of OCD sometimes called “Pure O”. I clicked on it and started reading. It was as though, up until that moment, I had been searching in the dark and somebody suddenly switched on a light. This was me. This was what I was experiencing, and I wasn’t alone! I was so relieved, it physically felt like a weight was lifted. I called my parents in tears, explaining to them that I knew what was going on, I wasn’t going mad!
I read some advice online that it is sometimes a good idea to take an article such as that to your health professional, to help explain what you are feeling. So, I dutifully turned up to my next counselling session, clutching a printout of the article on “Pure O, OCD”. I said to my counsellor “I think I have OCD”. She looked at me, and said, “Oh do you? So, are you really tidy and do you check things?”. I think she was trying to be helpful, but I stopped going after that.
I think the realisation that there was a name for what I was experiencing, and that there were other people in the world going through the same thing, was life altering. I’m not going to lie and say that it magically cured me, because it hasn’t. Some people argue that there is no cure for OCD, just management. I’ve definitely been able to manage it better since putting a name to it, partially because I’ve been able to access resources and advice specific to what I’ve been experiencing, and partially because a monster with a name is suddenly a lot less of a monster.
My OCD didn’t just vanish overnight. It has stuck around for years and on tired days, I still feel the sharp tug of anxiety in my gut when I see a story about abuse or murder on the news, I still subconsciously avoid exposing myself to triggers, even writing some words is hard for me as I type this. (I think you know which ones). OCD waxes and wanes. I think of it like a sleeping troll under a bridge sometimes, the bridge being a line of stress and tiredness which when crossed, wakes the troll. Sometimes, when it’s really bad I can almost feel it like a physical parasite on my brain. Somewhere at the base of my head and neck, knotting its web tighter and tighter. Then it loosens again, and I can almost feel the shadow of bruises it’s left, echoing when I see something that has triggered intrusive thoughts in the past. Most recently it reared it’s ugly head again when I moved to NZ with my boyfriend, in potentially the most painful and aggressive way yet… I almost wished to have some of the old obsessions back because this was so painful. That was in the thick of it, looking back now I realise how ridiculous that sounds. When you’re in the middle of it, it always seems like it’s the worst it’s ever been. It did when I was 13 and I thought I had meningitis, it’s always whatever scares me most at the time. Like a Boggart.
Reading this you’d think that I’ve never had times when OCD hasn’t consumed my life. But that’s not the case at all. As with anything of this nature, it feels never ending when you’re experiencing it, and when you’re happy you’re not paying attention to time. If I really think about it, there have been huge parts of my life where OCD has not been present. It’s so important to remember those times and focus on them as the important bits. Focus on the good. And when you are in the middle of a difficult time, and it feels like you’ll never come out the other side, remember that you always do. As my mum always likes to say, “This too shall pass”.
Thankfully, I am now seeing a very understanding GP and counsellor, who completely understand what is going on and have referred me to a psychologist for ERP. I’m feeling positive about this and hope that there is a glimmer of light at the end of the tunnel.
I really hope that by sharing this, somebody who is going through the same thing is able to seek the right support, or even gain a little bit of hope. You are not alone.