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Obsessive Compulsive Disorder: stigma, embarrassment, shame.

Updated: May 13, 2022

By James Adamson (he/him)

Hi! It feels very bizarre to introduce myself like this, but I’m Jamie, I’m 19, and I have OCD. I’ve been putting off writing this because I’m embarrassed both about having OCD and about being embarrassed. Go figure! In my title I’ve mentioned embarrassment and shame separately because in relation to my OCD, these two things are different. The embarrassment is the surface-level, everyday feeling that OCD causes me because of how it makes me act, and the shame is that deep heavy feeling from societal stigma.

Like all stigma around illnesses, stigma around OCD comes from misconceptions. These misconceptions, like “OCD is just when people are, like, really tidy” or “OCD is just weak-willed people exaggerating and being dramatic” create an attitude towards OCD that is simultaneously blasé and judgmental. Ever said or heard someone say: “I like my desk neat; I’m so OCD!” or seen those exploitative hoarder shows? People with OCD are both jokes and spectacles, so why would they want to be candid about their illness? If OCD is just a turn of phrase or something to gawk at on Channel 4, of course there’s going to be embarrassment around having it.

Against every instinct in my little anxiety-riddled body, I’m going to now very briefly explain some aspects of my OCD. It should go without saying that this is not the experience of everyone with OCD, nor the only type of experience of people with OCD, or even a comprehensive look at my OCD. After all, you are a stranger and I am a stranger! But I hope that this can help showcase a little more some of the truths about OCD.

So firstly, we have the obsessions: like the thought of someone dying or something vague and terrible happening, or the feeling that something is dirty when in reality it probably isn’t. These thoughts happen to everyone, but where OCD differs is that they become obsessions and the sufferer cannot let these thoughts go. Like, seriously, cannot let these thoughts go. Trust me, we would if we could.

So, to offset these obsessions I feel a compulsion to do something to ease the anxiety, like performing a ritual to ensure all numbers around me are good (whatever that means at the time, so it could be a digital clock being on a specific time or something being done a certain number of times), washing my hands, tapping, or touching things until it feels alright. Here’s a good analogy I once heard for it! A man sitting is on a train tearing off pieces of his napkin and throwing them out of the window because for as long as he does this, the tigers chasing the train won’t catch up and maul everyone. Irrational, right? But the whole time he has been doing this ritual, the tigers haven’t reached the train and everyone is safe, so you can see why he might connect the two.

There is this huge irrational responsibility hanging over my head at all times, meaning that an extremely common thing with OCD is everything being 100% your responsibility and therefore everything bad being 100% your fault. A stranger seems sad today at our seminar? I have to stop everything and make sure that everything is perfect and fixed in their life, because even though it’s not my fault it is my job and sole responsibility and everything else doesn’t matter. I had an intrusive thought, something which literally every single person on Earth gets and which has no implication on us as people? I’m a bad and dangerous person and should be locked up, and also I can’t stop picturing and imagining it all day, and just give me ten minutes while I pray for forgiveness so I don’t go to Hell for having a thought completely outwith my control. My partner had a bad day? That’s because I didn’t shut my eyes in time when the lecturer turned off the light. My friend’s phone broke? That’s because I accidentally stumbled onto that drain yesterday trying to avoid that other drain. My granny’s health is getting worse? That’s because of me. There was a natural disaster two continents over? Yep, my fault too.

So, what does this all mean? It means that everything I do has a moral implication, so I have to do more rituals to offset the guilt, so the rituals work, so I have to keep doing them, so I have an impact on everything… and so on. As you can imagine, this takes up hours of my day and makes me late for EVERYTHING and unable to do so many things. If I’m late or I’ve cancelled on you it’s almost definitely because of my OCD, even though I won’t say it.

I never want people to know I have OCD, even times where it would directly benefit me, because it’s humiliating. I don’t want to have to ask a seminar tutor or a friend to, please, play and pause that YouTube video again because the timestamp is 12:04, and if you don’t I’ll be hit by a car after this. I don’t want people to see me closing my eyes for a weirdly long time so that the last number I see on a public digital clock is a “good” number. I don’t want to tell employers or anyone leading something that I have OCD and that it might make X difficult for me or cause Y problem. My telling them this might lead to them judging me for being mentally ill, to them thinking I’m a freak, to them not believing me and just thinking I’m being dramatic because, after all, OCD is just when you’re neat or too stupid to challenge your thoughts. Even with my long-term partner, who understands and is patient with my illness, I’m still ashamed to have him see my rituals, because what if all of a sudden this is the last straw and he realises he doesn’t want to be with someone with a high-maintenance, visible mental illness? Even if someone doesn’t realise that what I’m doing is because of my OCD, they will still notice that I’m doing something… weird. Hell, it’s difficult and painful to tell my psychologist!

I don’t know if anyone I know at uni has OCD because the stigma means we can’t talk about it. There is something so nice about having OCD with a friend who also has it. It goes unspoken that some things are difficult or even impossible, that our illness is time-consuming and needs patience, that we feel ashamed. Shoutout to these people in my life with OCD for the times we’ve figured out which numbers are good for both of us, the embarrassed apologies and the genuine, sincere “it’s okay”s, the times we’ve pretended not to see when the other person is doing a ritual and doesn’t need staring, the understanding that sometimes we have to wait and sometimes we have to miss buses, and for the silent and pained comradery. Shoutout too to my friends without OCD who know about mine and try their best to understand it and how things need to be done so I can take part too. It’s a weird, irrational, stigmatised illness that’s difficult to understand through all the misconceptions we’re taught during our lives, and I’m so grateful that there are people in my life who love me enough to work through it even when it’s annoying and difficult for them.

I don’t know how to end this because I got emotional just there, but thank you for reading! I hope I’ve been able to shed some light on OCD and do my part to chisel off a teeny part of the stigma!

All my love, and remember to be kind to one another,

(Originally published 5/04/21)

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