Last Christmas I bought a graphic novel called The Nao of Brown. Huge, absorbing and intimate, it was the story of a young London woman of colour living with OCD. For the first time, I could see my own illness – flashes of intrusive thoughts, irrational fears, obsessions and compulsive habits – visualised in front of my eyes.
I thought about recommending the book to my family, but decided against it. One, the more you bang on about a book, the less people want to read it; two, did I really want them knowing what OCD was like?
Skip to now. I walk into the kitchen at home, and find my dad reading the book. I do a double take. Although he knows I have OCD, we’ve never spoken about it very much.
We discussed the book. Then this happened:
Him: “So is this what it’s like, having OCD?”
Me: [hesitates] “Yes, it is. But…”
Then we talked about it.
Nao of Brown is not a perfect book – it forces OCD into a cinematic narrative, along with other problems. But still! He had been given an insight, we’d had a conversation about it. I was amazed that a single book could do that.
The thing is, OCD is hard to talk about.
The problem with speaking about it in any way is that it is a very misunderstood illness, one that plays on our worst fears. For many people, it’s hard to speak about any of their OCD obsessions, fears or worries at all.
We’re developing the tools to talk about depression, self harm and eating disorders, and I’m forever thankful for it. But there’s work to be done.
It’s not always enough to hope a book ends up in the right hands; being able to talk about OCD gives you power. So does having your mental illness respected and validated.
These are some usual responses to disclosing that you have OCD:
- “What’s OCD?”
- “OCD? But you’re not neat”
- “Oh, I saw a documentary about that!” [goes on to explain how OCD works]
- “But OCD’s a SEVERE mental illness. People are COMMITTED because of OCD. You don’t have OCD. You’re just anxious. You’re an anxious person. You should try improving your diet.”
- “Are you sure you have OCD?”
- “So what’s it like having OCD?”
- “I have OCD too! I’ve got these weird habits like only eating red smarties!”
I don’t blame anyone for saying things like this. It’s hard to know anything about OCD when it’s so misunderstood and there is so little information about it. It’s a vicious cycle: OCD is hard to talk about: we have very little cultural precedent for discussing OCD openly, which makes it harder to talk about. So we don’t talk about it.
But we can change that.
For people with OCD, it should be possible to verbalise the fact that you have OCD without necessarily having to:
- explain your entire experience of living with a painful mental illness
- talk about your actual intrusive thoughts and obsessions to a near-stranger, as though you’re speaking to a therapist
- clarify that you’re not making it up
- have your honesty and self-knowledge questioned
- have your illness trivialised and compared to other people’s silly habits
- having your life experience taken as being universal for everyone who has OCD
So for people who don’t have OCD, here are some ways you can help:
- Don’t ask people with OCD to explain their lives to you, if they don’t want to!
Everyone’s experiences are different. Mentally ill people are not robots who can explain their mental illness to you on command.
You need permission, trust, and respect to have conversations like this.
I am happy to talk about OCD if you have my permission and trust, and I know there is enough respect between us for you to take it seriously!
Similarly, if you don’t know the person well don’t ask what kind of intrusive thoughts they have. This is an upsetting subject for the person with OCD, and it takes a lot of trust to discuss it.
- Don’t assume people with OCD are all neat.
Some of us are neat. Some of us are messy. Some of us have OCD rituals like cleaning, others just have intrusive thoughts. Some of us are shy, others are extroverted. Many of us have other mental illnesses, or mental or physical disabilities. Some of us have mild OCD, for other people it is so severe they have to be hospitalised.
In short, just accept what the person is like. Accept their experiences are real. Don’t use their personal habits to question their OCD.
- You are not an expert because you read one article or watched one documentary!
Most documentaries and articles about OCD pick the most sensational cases. If you don’t have OCD, you are much better off assuming you don’t know much from the jump. And don’t hand out diet and lifestyle advice when it’s not asked for.
- Don’t explain to people who have OCD what OCD is like.
We know, dude.
- Don’t assume the experiences of one person with OCD are universal.
People have done this with me, which is why I try to clarify that my life experiences are not the norm. Nor am I an expert: I’m just a young white cartoonist, in South London.
There is no such thing as a typical life experience, or a normal manifestation of OCD. Be open to the fact that people’s experiences are different.
- Do not ask people if they’re “sure” they have OCD!
If someone has diagnosed themselves, they are probably already questioning and feeling a huge amount of self doubt. If you’re not a doctor and don’t know much about OCD, there’s no reason for you to add to that load.
If someone is officially diagnosed by a doctor, they’re probably already worried that no one takes their OCD seriously.
If the person who has disclosed OCD to you is a friend or colleague, offer your support. If they’re not close, accept their word. It is OK to say you don’t understand and OK to ask questions, so long as you ask permission first.
- Don’t trivialise. Don’t crack a joke.
Disclosing a mental illness isn’t usually much fun: it takes trust. People disclosing will probably be nervous. It’s generally not the right time to try and lighten the mood, especially if you don’t know the person too well yet.
Be sensitive to the tone and subject of the conversation.
Yeah, some people cope with difficult situations with humour, and people with OCD might do that too. But there’s a time and a place for everything. The person disclosing will probably be a lot more nervous than you!
That goes for other mental illnesses, as well!