The first time I vividly remember having OCD was when I was 6 years old. Back then it was a lot different though. There was no underlying reason for my need to carefully count, ritualise or think the same thing over and over apart from preventing a panic attack. Yes you read that right, I was having panic attacks age 6. It was just a normal part of my life, it didn’t start to become problematic until I was 11. It was school photo day and being in a school with over 800 pupils meant that our rickety metal structure on which we had to stand was a lot larger than the majority. When I realised that I would be up really high on the structure, my heart started to pound. I looked behind and started to hear a consistent thought trail going through my head.
You’re going to fall through the gap and die. If you fall at this height you will die.
Then to top everything off, it was a hot day, the cameraman was faffing around with his new fangled SLR camera and couldn’t get it working so we were all burning for over 15 minutes on this giant metal leviathan. Inevitably, the mixture of heat, standing still and lack of water meant that someone ended up fainting in one of the front rows… followed by another… then another…
You’re next. You will fall through the gap and DIE
By this point my neighbours had noticed that I had gone deathly pale, was shuffling side to side making a distressing ‘mmmmmm’ noise and wringing my hands obsessively. They pulled me across to the hand rail which I grabbed hold of and I started to scream, partly out of fear, partly to drown out the incessant thoughts. A teacher ended up carrying me down and I had to be sent home. That was just the first of many OCD incidents.
The teen years
Age 12 I lost my Granny to Cancer. Cue the ‘I’m going to die of Cancer’ obsessions. Then the more typically known OCD obsession with germs began. It snuck in so slowly that no one really noticed, besides at the same time my undiagnosed Tourettes was starting to show it’s ugly head so that was most people’s concern. Germ phobia changed to vomit phobia (emetephobia) and my thoughts were constant.
You’re going to throw up. Your stomach hurts, that means you will get sick.
I can’t write the entirety of the thoughts I had as they were LOOOONG and would take up an entire blog post! The trouble is with the emetephobia was it was a vicious circle as is most of OCD. I was suffering badly with stress which made my stomach hurt (later diagnosed as irritable bowel syndrome). When my stomach hurt I felt sick. When I felt sick I thought I was ill with a bug and that I was going to be sick. The more I worried that I was going to be sick, the more my stomach hurt. I managed to convince myself that eating polos was the only way to stop myself being sick. Sweets were banned in school (classroom especially) so I had to be quite sneaky, hiding them in the sleeves of my baggy school jumper. No polos in my mind meant that I would end up being sick.
Aged 15, my more severe intrusive thoughts began and as they were nothing to do with ‘traditional’ OCD, no one made the link. Instead I was told I was psychotic and put on Risperdal which didn’t help me one bit. I would think about death mostly. Often my death or someone close to me. One night I was up until near midnight crying as I told my Mum that if I died I worried about where all my cuddly toys would go. I would see images of my beloved pet bunnies dead and have to get up in the middle of the night to check they were okay. Eventually the psychiatrist was convinced I was not psychotic, but still the link to OCD was not made. I was diagnosed with OCD age 17 just as I was leaving CAMHS (Child and adolescent mental health service) but still it was isolated to my germ phobia and hand washing which made my hands bleed. Other professionals disagreed entirely with my OCD diagnosis or doubted it as I lived in a pit of a bedroom and had terrible personal hygiene. What they didn’t realise was that the pit was caused by irrational fear of losing important objects (which was bordering on obsessive hoarding) that included anything from my cuddly toys to yoghurt pots and crisp packets (they might be worth something one day was what my head thought!). My poor personal hygiene was because I was scared of getting contaminated by other people’s bodily fluids (a problem which worsened significantly when my Step-dad moved in as he was ‘outside germs’) and cleaning wasn’t an option as I was convinced that I would get burnt or contaminated with the chemicals or worse, might accidentally drink them. With my Tourettes making me do weird things as well (still didn’t know what it was yet) my fear seemed quite rational. The problem is, I was unable to talk about my problems as I thought I was going to be diagnosed as schizophrenic. I eventually and reluctantly started medication for my OCD and anxiety.
As well as the germs, emetephobia, fear of chemicals and fear of death, new worrying symptoms started in my late teens to early 20’s. The thoughts were becoming more intense and were convincing me that I could now kill people just by thinking about a certain person and their death or them getting sick with Cancer or something else vile. I was driving my poor Mum up the wall with my near constant calls to check that she hadn’t run her car off the road or been involved in a crash because I had thought about it. I had to check the internet almost constantly to make sure I hadn’t killed Eamonn Holmes by thinking of his death (as distressing as that was at the time, I can look back and laugh a little!). I then started to obsess that the ‘thoughts’ might not be mine, that I was going mad like my great aunty who suffers from Schizophrenia. I rang my Mum up a lot to check that I was definitely not mad. ‘What if the doctors made a mistake?’ I used to ask over and over. No answer could relax me.
I started to check people after walking past them thinking I had punched them in the face or swore at them (the latter did sometimes happen thanks to my good old Tourettes). I started to repeat ‘sorry’ four times just in case. Standing at a station waiting for the train, I got constant thoughts to jump in front of the train. What if I pushed that random bloke over? Would that make me a murderer? The police would come and lock me up. Literally the whole scenario would play out like that in my head. At one point, living close to the A1, I had to wait for a bus on the busy road. All I could think of was that I was going to run into the traffic and be killed. One time a staff member saw me literally ‘disappear’ into a trance as the whole scenario played out in my head. I saw myself run into the road, get hit by a car. I could see people screaming and crying. I saw the paramedics. I saw them pronounce me dead. I saw my funeral, people I loved crying… It went on and on. Eventually I would snap out of the trance and come back to reality where I would still be safely standing on the side of the road, but the thought still distressed me.
Eventually I came across the charity OCD-UK. It turned out that the intrusive thoughts, seeing my own death, thinking I could kill other people, thinking I had done bad things etc was part of my OCD. I literally yelled at the computer when I read that ‘WHY DID NOBODY TELL ME THAT WAS OCD!?’ Then I realised I had never told anyone about these thoughts in the fear that it could be psychosis. Slowly but surely, I began to accept that this was indeed my OCD. It didn’t stop my ‘what if I am psychotic’ obsession but it gave me ammo to fire back at it! These days my OCD is as bad as ever. I get thoughts that I HAVE to jump out of upstairs windows to kill myself even when I am not suicidal. The self injurous ritual that happens with that has left my left arm looking like a giant scar. I still regularly check that I haven’t killed celebrities. I still call my Mum (a lot less now) to make sure I haven’t hurt or killed her by thinking about it. I managed to overcome my fear of chemicals, but that ended up converting into a major cleaning ritual (especially if someone mentions sickness or stomach bugs). My emetephobia went through a brief period of remission then came back with a vengance. Currently my OCD is severe-disabling. Rituals and rumination control my life. Medication no longer touches it and the NHS have been as much help as a search and rescue dog with no legs. I have been begging for help since I was 15 with my OCD and I am now 25 and still haven’t had CBT or any other kind of therapy. I’ve gone beyond the point of self-treatment (although I still try). The panic which goes along with my obsessive thoughts has now sent me into such severe fight or flight response that I am in a LOT of trouble as I have become physically aggressive. I don’t know what the future holds currently, but we are looking into a specialist hospital which deals with OCD and autism.