This article contains references to intrusive, violent thoughts (including thoughts about harming a child) that readers might find upsetting.

“You told me before we got married that you have OCD… I don’t think you do because you’re messy!” Of all the people in my life who could misunderstand OCD, I was flabbergasted when this comment came from my husband, a man who has lived with me for seven years and witnessed first-hand how OCD has wreaked havoc on my life. Perhaps he said it in jest, but having experienced almost a lifetime of people asking me if OCD means I am a perfectionist or a clean freak, I was disappointed when he said this.

I have had obsessive compulsive disorder (OCD) since I was eight years old and was officially diagnosed by a psychiatrist when I was 17. My OCD has flared on and off over the years and each time it comes back, it returns with a new theme.

I have had responsibility OCD, where as a child, I would repeatedly check that the front door was locked, the TV switched off, windows closed and oven gas taps turned off because I felt it was my responsibility to keep my family safe. I’ve had religious OCD, which triggered blasphemous thoughts every time I prayed.

The scariest manifestation of OCD I had was harm OCD when I had my son three years ago – I had constant intrusive thoughts that I would intentionally stamp on him when he was lying on his play gym, throw him down the stairs or that when I took him out in his buggy, I would let go of the buggy into a main road.

In the mainstream, OCD is often talked about in terms of contamination and ‘just right’ subtypes, and while these are very real OCD themes, there is a wide variety of forms the condition takes. Without increased awareness of these subtypes, OCD sufferers can think their intrusive thoughts and compulsions mean they are crazy, sick or dangerous.

Leeds-based psychologist Dr Aneesa Sharriff specialises in the treatment of OCD and says it’s not unusual for someone with OCD to experience more than one subtype or for the way OCD shows up to change over time. “It’s so important to raise awareness that OCD can show up in different forms, as many people may not recognise the signs in lesser talked about types,” Sharriff tells Stylist. “OCD is distinct from more general worries and anxiety, and being able to recognise that you may be struggling with signs and symptoms can help identify the right type of treatment much faster. Many people feel ashamed of their intrusive thoughts and think of themselves as weird, crazy or dangerous, but OCD is a common condition, and we have very effective therapies that can be helpful in reducing or eliminating the symptoms.

“It’s very important to work with a specialist who can quickly diagnose the problem and start to use effective approaches such as cognitive behavioural therapies that are specifically adapted for OCD.”

Mia, 21, a psychology student who works part-time for OCD UK and shares her journey on Instagram at @me_myself_and_mental_health.

“My OCD started around the age of eight. When I started secondary school, it got a lot worse. It was mainly harm OCD, fixing on the idea that I would hurt my family. So, I wouldn’t allow myself to be around food preparation for fear I would poison them. There’s a specific moment I remember when I was out with my nana for lunch: she had a cup of tea and went off to the bathroom. There were sugar sachets and I remember thinking that I had poisoned one of the sachets and I couldn’t let her drink the tea. I have POCD as well, which is actually quite common; fears around harming children.”

Tima, 33, UK anti-doping agent

“I had a flare-up of OCD this year. I spent every night in emergency care because I could not put anything in my mouth without thinking it would kill me. When I eat, I have the worst anxiety attacks, thinking I am having an allergic reaction and will have anaphylactic shock. I carry an EpiPen around with me, even though I have never had an allergic reaction. It got so bad that I stopped eating for four months. I also cannot shake anyone’s hand without sanitising my hands afterwards. If anyone touches any part of me or my things I have to wash my hands afterwards. The same applies if I have to touch a colleague’s laptop.”

Claudia, 33, an OCD advocate who shares her experiences at @morethan.ocd

“I have had OCD since I was around eight or nine. The subtypes I struggle with are scrupulosity, moral and ‘just right’. I have been in therapy for one year now and I am starting to feel better. One of the most repetitive thoughts I have is that I am a bad and evil person. When I have those thoughts, I feel guilty and anxious and just want to disappear. These thoughts can be triggered when I take a shower or when I brush my teeth and I feel the urgency to repeat what I was doing. 

“I used to get blasphemous thoughts when I prayed or saw a religious image and then I would have to start asking for forgiveness or repeat the prayer many times to neutralise the thought. I also have thoughts that something bad is going to happen, like my husband is going to have an accident or my mother will die soon. When I have those, I have to repeat what I am doing. But when I do that, it just gets worse, because my anxiety increases.”

Rachel, 50, journalist and editor

“My OCD is not about alphabetising my bookshelf, lining up the pens in size order on my desk or living in a spotless home that’s been bleached to within an inch of its life. After being physically attacked by a stranger when I was 16, my OCD is about avoiding contamination. It’s about not touching a door handle or the buttons on a chip and pin device or the handrail on the Tube, because I don’t know who touched those things before I did, and their ‘evil’ could be transferred to me. It’s not about being amusingly pernickety; it’s about exhausting self-preservation.”

Sandra, 33, a commercial manager who shares her story on Instagram at @mypureocdawakening

“I spent a decade in my 20s experiencing all kinds of intrusive thoughts. My life consisted of constant rumination, checking my thoughts, analysing past events repeatedly, reassurance seeking, googling and avoiding triggers. I felt such shame and disgust surrounding my thoughts and felt I had no control over them other than the temporary relief I would feel once I engaged in these mental compulsions. In my late 20s, I came across a person in an online forum describing exactly what I was going through. I feel much better after receiving treatment but the loneliness and pain I experienced for many years thinking I was a monster will be something I have to live with for the rest of my life.”

Alexandra, 43, life coach and founder of Damsel Not In Distress

“My OCD subtypes are hygiene and responsibility. I find the urban environment with all its potential hazards very difficult to navigate. For example, having read stories of people or pets being trapped in cars, I often find myself compelled to walk back to check the inside of a car if I worry that I might have spotted something untoward out of the corner of my eye. I hate shaking hands, which is awkward given our social norms. Working in London in senior positions, I would carry armfuls of stuff so I couldn’t shake hands when I met someone. When I had to shake hands, I would discreetly use antibacterial gel afterwards. There was one time I was representing the UK as a civil servant abroad and I had to shake many people’s hands at a meeting. I couldn’t clean my hands afterwards because it would have been obvious and potentially caused offence. So, I couldn’t do anything with that hand until I’d had a chance to clean it.”

“As a child I was plagued with intrusive thoughts about our existence and harm coming to loved ones. During my teens, somatic and relationship themes took over. When I was at university, contamination obsessions joined the party and when I had my first child, perinatal OCD took its seat. Harm/perinatal related intrusive thoughts have been the most debilitating for me. I had episodes when I was unable to leave my house, I couldn’t let anybody else feed or take my children anywhere, I struggled to get to work, it interfered with my relationships and stripped me of all the things I enjoyed. Compulsions were often internal with mental rituals (counting, praying, neutralising thoughts) and rumination being key players. I also used compulsive avoidance, sought reassurance, and checked my feelings towards the thoughts. Treatment with ERP (exposure and response prevention) at a specialist centre in London, plus SSRIs, self-compassion and acceptance have helped me get my life back and manage the disorder day to day.”

If you have OCD or suspect you may have, speak to your GP about treatment options. For information and support, visit OCD action and OCD UK. For immediate support, contact the Samaritans 24-hour support line on 116 123.

Frame Of Mind is Stylist’s home for all things mental health and the mind. From expert advice on the small changes you can make to improve your wellbeing to first-person essays and features on topics ranging from autism to antidepressants, we’ll be exploring mental health in all its forms. You can check out the series home page to get started.

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