What does OCD feel like?

In honour of OCD Week, and because I’ve recently started seeing a new counsellor, I wanted to share a few of my experiences of having OCD.

I’ve struggled with OCD since I was around eight or nine years old. Initially it was very ritual based. I would lie awake at night forcing myself to count to 100 without any interruption from the outside world. If a dog barked, or a car went past, I had to start from zero. Sometimes this would take hours. I’d feel hot, clammy and frustrated. I wanted so badly to sleep but wouldn’t let myself until I’d reached 100. Often my mum would come into my room to find me crying, big loud sobs of frustration.

For me that feeling was like trying to thread a needle. That queasy sensation you can sometimes get when you’re trying to do something fiddly that requires a lot of concentration.

An overwhelming wave of confusion and panic would usually crash over me as I tried to organise my scattered mind, and grab hold of a solid thought to bring me back to reality.

Looking back, I have no idea why I felt like I had to do any of those things. You hear a lot about OCD sufferers carrying out their rituals to stop something bad happening to their loved ones. I felt no such responsibility. My counsellor suggested it was maybe a way for me to have a sense of control, at a time in my life when control was slipping through my fingertips.

As well as counting, there were certain words I had to say at particular times, or thoughts I needed to think before I could start talking. If someone ‘interrupted’ me I’d lose my temper or cry. Of course, no-one understood why.

Soon my compulsions became more about cleanliness, rooted in an overwhelming fear of contamination. While other children played in sandboxes, or rolled around in the grass, I stood back, hating the feel of anything dirty on me. The compulsive hand washing came soon after, a habit which I never managed to break.

Right now my hands are red, raw and sore from over-washing. I have an itch on my nose I’m fighting the urge to scratch, because I haven’t washed my hands, and I can’t touch my face without doing that first. I feel uncomfortable, irritable and drained from the effort of fighting my natural instincts.

OCD can be debilitating, and I’m so grateful that mine hasn’t reached that point. A few months ago however, I could see it beginning to spiral. The reality of how bad I’d become shocked me so much it was a large part of the reason I decided to start taking medication.

By this point, hand washing had quickly led to showering every time I used the bathroom. While working from home I was showering up to eight times a day. As a result I often developed rashes and itchy patches of eczema on my arms.

My way to avoid compulsive showering eventually became going to the bathroom as little as possible. I stopped drinking water, which meant I often suffered from headaches, fatigue and dry, cracked lips.

My counsellor asked me if there’s ever a time when I actually feel clean. It was the first time I’d stopped to think about this and I realised that no, I never feel clean. There’s a brief period of time while I’m in the shower, but other than that, I always feel dirty.

What does dirty feel like?

Sometimes the dirt feels like a weight pulling me down. Other times it just feels like a thin layer of grime on my skin. Sometimes it’s hot, or itchy. I thought everyone felt like that. I only learned recently that’s not true.

Having OCD is like always being on high alert, forever watching for potential threats or signs of things I perceive as dangerous. After a day of constantly checking my surroundings, making a mental note of areas not to touch and inspecting anything I eat for signs of contamination, I’m normally exhausted.

Most people go about their day-to-day lives without giving much thought to small tasks like preparing a snack, or going to the bathroom. For someone with OCD these things can use up all the energy they have. On some days I’ve felt too drained or overwhelmed to eat and have reached the evening feeling tearful and hungry.

OCD isn’t rational. It’s a constant battle between the logical part of the brain and the part that’s convinced itself that these compulsive behaviours are essential to staying safe and healthy. It makes me feel so stupid when I can’t do simple things like accept a crisp from someone else’s packet, or eat a burger with my hands.

It makes me feel weak.

Do you remember the old Dettol advert with the neon bacteria on the woman’s hand? It was supposed to demonstrate how quick and easy it is to spread germs.

That advert is my life. I see those neon pink handprints everywhere, growing and spreading. Nowhere around me is safe.

I’m aware of how this all sounds. Believe me, that’s the worst thing about OCD. I know I’m not behaving rationally. I know I don’t need to do half the things I do. Except that when I’ve got my hands under scalding hot water and I’m washing them until they’re red and swollen, I believe with 100% certainty that I’m just doing what I have to do to keep myself safe.

If you want a better understanding of what it’s like living with OCD I highly recommend Holly Bourne’s book, Am I Normal Yet? She captures the mind-set of an OCD sufferer so perfectly that at times I thought she’d peered right inside my head.

There are so many forms of OCD and not everyone’s experiences will be like mine. For those that don’t have OCD I hope this post helps to illustrate that it is so much more than liking your pens lined up neatly, or keeping your house tidy.

For me OCD is confusion, pain, panic, hunger, dehydration, exhaustion, weakness, anger, despair, fear and frustration.

What does OCD feel like to you?

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5 Comments

  1. Aude
    October 14, 2016 / 11:36 am

    Hello 🙂

    I have OCD for ten years now. I have intrusive violent thoughts and i’m worriying to hurt someone physically (loved ones or unknown people). It was very upsetting at first and I spent a lot of time doing rituals, between 16 and 19 years old. To quote the ocduk.org site :

    – Mental rituals or thought patterns such as saying a particular phrase, or counting to a certain number, to ‘neutralise’ an obsessional thought (thought that something bad may happen to a loved one if not carried out)
    – Saying out loud (or quietly) specific words in response to other words (to prevent disaster happening).
    – Avoidance of kitchen knives and other such instruments, (for example locking them in a drawer) to prevent coming into contact with them (thought of harming someone with a knife inadvertently)

    For 5 or 6 years now (I’m 26), I’m really better and not doing some of my rituals (because of medication and therapies) and now I’m nearly “free” to do what I want in my life, but not all the time and there are a lot of efforts to do again. What I feel is : extreme tiredness, headaches (bot not “migraines” one’s, I feel my head, links side of my head, would explode), anxiety…

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  3. Antony
    October 18, 2016 / 7:43 am

    Hey,

    I originally read your article about your battle with OCD on Rethink. As a OCD sufferer myself, I can fully empathise with what you go through each day. I thought I should share a bit about my own struggles with this terrible affliction.

    I’ve been affected by OCD for nearly 20 years. It began soon after I developed agoraphobia when I was 13. I guess it grew from – and fed off – the agoraphobia and the overwhelming desire I had to avoid any type of interaction with the outside world.

    It was always based around contamination, but not necessarily germs or dirt, more a fear of people coming into contact with me or anything that belonged to me. I felt I couldn’t be settled or happy until I erased the distress that it caused me.

    It started with me just using wet wipes to cleanse my hands or anything I considered ‘unclean’, but it quickly escalated to me believing that only scolding hot water and disinfectant was capable of truly getting rid of the ‘germs’. It wasn’t enough to wash my hands just once, either; it had to be multiple times, sometimes spread over a lengthy period of time.

    I also started to imagine more elaborate and unusual ways in which I could potentially be contaminated. It got to the point where I’d wash all my clothes, towels and bedding separate from the rest of the family. I refused to have the windows in my room open and would have the curtains closed 24/7 because I believed the wind could blow contamination in from outside. I even started to wear latex gloves around the house (which, actually, did help me to control my hand-washing urges). It became a truly debilitating illness that took over my life completely with the constant, time-consuming rituals (for instance, it would take me over an hour to change my bedding). I lived in constant fear of being ‘contaminated’.

    I also went through that phase of believing I was ‘bonkers’, a ‘freak’ – that even fellow sufferers of obsessive compulsions wouldn’t go to the lengths I went to to remain clean. I did have some really bizarre rituals (nearly as weird as Howard Hughes wearing tissue boxes on his feet). I knew that I was harming my mental well-being with my actions, but I just couldn’t stop it.

    I only began to confront my disorder after I started working with my local mental health team. I went through the whole process of CBT, and finally to taking medication. I eventually got over my agoraphobia and with that I was slowly able to contain my OCD urges enough to function in day-to-day life. i managed to get a fantastic job supporting adults with disabilities, move into my own flat, and build up friendships for the first time in my adult life.

    I still wash my hands more often than necessary and I always carry a bottle of antibacterial hand sanitiser whenever I go out, but I’m now free from the non-stop worrying and over analyzing.

    I still hate traveling on public transport, though, especially buses. I’m considering getting a pair of ‘bus pants’ like Sheldon =)

  4. February 21, 2017 / 11:30 pm

    I don’t have OCD but I want you to know we’re rooting for you here.

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