Your quips aren’t funny, and yes, I’m going to tell you why.

There are few mental disorders so woefully misunderstood and misappropriated as my dear friend Obsessive-Compulsive Disorder. The term is thrown around by the masses as a way of signalling picky idiosyncrasies (“I just haaaaave to have the volume on an equal number of a multiple of 5… I’m so OCD, hah.”) or a proclivity for cleanliness (“I’ve just cleaned the kitchen within an inch of its life, my OCD is coming out!“), carrying with it connotations of quirky adorableness. I can quickly oust this particular myth: in the 6+ years that I’ve suffered from OCD, it has been neither quirky nor adorable. There’s nothing cute about my obsessive-compulsive phobia of head lice. It’s oddly specific (and a little bit unique, which is a great point-scorer with the cool kids) but unfortunately for me, that doesn’t mean that it can’t ruin almost everything. I wish I were being as melodramatic as I sound.

For a quick primer on how people misconceive OCD, let’s have a look at the Twitter hashtag for #OCD. While some tweets are news articles or thoughtful commentaries, the majority are along these lines:

I mean, that’s just being pragmatic, but okay.

Ah, that quirky and unique little discomfort that most people experience when staying in unusual surroundings.

This guy. He understands the struggle. He gets it. (He doesn’t.)

Trivialising panic attacks *and* OCD in one tweet? We’re on to a winner. Yeah, I don’t know how she copes with such crippling problems.

This is especially odd, because it’s the reverse of what I’ve found to be true of being an OCD sufferer. OCD has never made me friends, it has only helped me to alienate and lose them. You do you, though.

The co-option of “OCD” as a thing that one can “be” as opposed to a very real disorder from which one can suffer has mutated it into a near-meaningless adjective for describing anything vaguely neurotic, and even actions that rest comfortably within the reaches of normal habitual behaviour. It makes it into a way that one feels, an offbeat synonym for slightly disquieted, rather than a term for a condition that makes one feel multitudes of different things. I have never “felt OCD”. I have felt terrified, panicked, bleak, hopeless, despairing, and more nervous than I can ever qualify with words.

Hilarious. Fuck off.

In an age where we lambaste and chastise the trivialisation of more ~mainstream~ — and I use this word with caution, it’s not ideal but I’ve struggled for alternatives — mental disorders (no one would ever post a picture of a cake and caption it with: “ew!! gonna go be anorexic brb”, for example) it’s frightening but telling that we still turn a blind eye to the commodification of ones that are not so easily understood. It’s far easier to stand in solidarity with depression, with generalised anxiety, because as far as the quotidian citizen can see they are extrapolations of relatable and empathetic experiences: we all know sadness, stress and worry. While this is a gross oversimplification of both disorders, it’s an oversimplification that encourages widespread empathy and sensitivity from the general public.

The difference between OCD and depression/GAD arises when we acknowledge that the oversimplification of the public perception of OCD boils down to “quirk”. Quirk is not something that we pity, it’s something at which we chuckle lightly, exchange knowing looks, and then move past. Quirk is Uncle Jim always eating his peas one by one, and we smile serenely at Uncle Jim when he’s the last one at the dinner table. We don’t offer our support to him because, well, why would he need it? OCD is so easy to trivialise and glamorise because we don’t take it seriously. We don’t think it’s a serious problem. It’s just a cute thing. It’s caring too much, it’s being a little bit too attentive. Adorable, no?

Well, not quite. Not at all, actually. The existence that I lead every day is not cute, or quirky, or glamorous. It is ugly, exhausting, and at times genuinely disgusting. I talk about this particular truth often, and deploy it as a reason why I’d rather people didn’t trivialise my experiences (and those of others) by throwing OCD around like a new-age tennis ball. In the next few days, I intend to finish writing a summary of one of the daily experiences that we all undertake: the morning routine. I’d started writing it as part of this article, but it’d bulked up the word count to a high and infeasible number, which should alone be proof enough that my daily experiences are gruelling and extensive. (Or that I can’t write succinctly, your call.)

No? It doesn’t? Because??? That’s????? Not usually??? How?? OCD? Works???????????

It’s not only the day-to-day to consider, either. OCD has meant (and continues to mean) that it’s necessary to make large alterations to my life’s trajectory. It’s hard for me to work in most student-y jobs — which are primarily in the retail and service industries — because they largely entail heavy levels of physical interaction with members of the public. Even the nature of having to keep to a shift schedule is in many ways incompatible with OCD as I experience it: making work at 9am may prove difficult if I’m kept up until 5 by intrusive thoughts and decontamination rituals. I’ve also had to come to terms with the fact that I may never be able to have and raise children, for reasons which are self-evident of my specific triggers. I love children, and would love to be a mother, but unless I’m capable of making drastic and permanent changes in my life and my mindset, a couple of vomiting and pooping tiny humans won’t be on the cards for me.

In the plainest of terms: OCD as the butt of a joke or a one-liner is offensive. If you are not a sufferer, the term is not for you to co-opt or employ as a signifier of your own twee neuroses. OCD is only a joke insofar as it’s almost absurd and laughable that it’s been able to have such a tangible impact on my past, present and future. It’s quirky in that it has often led me to question my own sanity, because I see things that aren’t there and I feel compelled to act upon urges that don’t make sense. Every time someone misappropriates OCD for their own light-hearted ends, the OCD sufferers of the world receive a heavy-hearted message: “we don’t care about you, or your suffering, or your health“.

Look, it’s real! You don’t just have to take my word for it, The Science is here to prove everything. Brains of people with OCD genuinely function differently to the brains of non-sufferers.

So, I’d like to leave you with some questions:

Where were the people hashtagging #OCD when I stood in my bathroom at 2am when I was 12 years old, having already been awake for countless hours, ruthlessly combing through my hair with a lice comb until my scalp had open sores because I’d had to share a bunk bed with my younger brother for the couple of days prior?

Where were the people abstractly campaigning against depression by sharing Facebook posts (but telling me to “get over [myself]“) when I stood screaming in the shower aged 13 because I’d been in there for an hour, and knew that it would be another hour or more until I’d feel comfortable or tired enough to leave? They weren’t there when my mother was standing in the bathroom close to tears.

When I was 14, and I wet myself in my own bedroom because I was too fucking anxious about touching the door handle to my room and walking to the bathroom (because contamination!), where were the people who buy Fred & Friends’s OCD Chef chopping board on Amazon? When I felt more shame than I can describe, where were they? What about when I alienated myself from all of my friends and spent most of the year in toilet cubicles at school during breaks because I was far too terrified to contemplate anything else?

Every time I self-harmed and contemplated suicide when I was 15, I wondered where the people who say “well, everyone has a little OCD in them!” were, and why they didn’t care when some girls in the PE changing rooms would scratch their heads whilst standing over my gym kit and “joke” about having lice so they could watch me squirm. (Kids are cruel, and while I don’t blame them now, that was no consolation then.)

Through 16 and 17, though I started to improve, with each anti-depressant popped and each quirky Tumblr post scrolled past I knew that I would receive no real empathy.

At 18, I haven’t touched any of my family members in 5 years.

When you trivialise OCD and minimise it to nothing but descriptive fodder, you create a culture of shame for everyone who has ever found it hard (or impossible) to push back against it. I fight a demoralising and wearying battle against OCD every day, and yes, it often feels like I may never succeed. I ask you, dear reader, to respect my efforts and the efforts of all other OCD sufferers, and in turn to not jovially appropriate our struggles. Why make us feel like we’ve already lost a fight we’re trying indescribably hard to win?

Please feel free to share and comment, to tweet me at @francescajayne_ or to drop me an email at francescajaynecollins@gmail.com.

Click through images in body of text for image sources. Header image can be found here. All sources for tweets can be found by clicking the dated hyperlinks.