Changing the way we talk about OCD

Feature image by Volodymyr Hryshchenko on Unsplash

I’ve been thinking about writing this blog for a while but always end up agonising over whether it’s the right time. There are so many voices that need to be given the space to be heard right now – more and more every day it seems. So it feels selfish to try to add my own to that number.

But that is one of the insidious things about mental illness. It tells you that you aren’t worth it, that so many people have it so much worse that you, that you need to get over yourself. It’s one of the reasons so many people don’t seek help. They feel that help is for others, not them.

Which is why, when I was inspired by an awesome Re: news article shared by the Mental Health Foundation this morning, with amazingly brave people sharing their OCD stories, I decided to write the damned blog.

Re: People with obsessive compulsive disorder say lockdown allowed their condition to thrive (renews.co.nz) – image courtesy of the Mental Health Foundation of New Zealand.

My story in brief

I’ve shared this before, but for the benefit of new readers, I’ve lived with obsessive compulsive disorder pretty much all my life. I was diagnosed as a teenager in the 1990s when mental illness was something people Did Not Talk About and there was a very real fear, realistic or not, that if people found out something was wrong in your head you could end up in a nuthatch.

OCD often comes as part of a triad with anxiety and depression, which is not surprising really – taking on your own brain can be scary and exhausting.

Through a combination of therapy I was lucky enough to be able to access when I was younger, medication and a great brain-flosser I talk to on the regular, I only have mild symptoms now, but the anxiety is still there and rears its ugly head from time to time. Lockdown certainly gave it a chance to get nice and comfy for a while.

Words matter

While we were busy trying to fight the rona as a country our heath minister, while encouraging us all to wash our hands, casually said “now is the time for OCD.” It felt like a slap in the face.

There is never ‘a time for OCD’. It’s a horrific disorder that left unchecked can utterly destroy your life. Our health minister should have known better than that. OCD isn’t always germophobia or hand washing either. Nor is it always about being incredibly tidy or organised (anyone who has seen the state of my desk at work can attest to that.)

When you are older than Google

These are the manifestations of it that most people know about, and that is understandable. They are the easiest to explain, or portray on TV or in film. There are many other types of OCD that are just as debilitating that don’t get the air time.

I’ve always been torn about this, because it was amazing for me when people actually started saying those three letters out loud. Letters I had previously only heard from doctors or therapists or read in the textbooks I got out from the library (yes younger readers, I am one of those people who are older than Google!) The experiences being portrayed or talked about weren’t necessarily the ones I was having, but the fact they were being portrayed and talked about at all was amazing for me.

The problem is that when people only hear about those ones is that the others people live with go unrecognised, and potentially untreated.

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A really great account to follow on Instagram for insight into the different types of OCD is @obsessivelyeverafter. Run by psychotherapist and OCD specialist Alegra Kastens, it has made my day on a number of occasions and above is one of my fave posts (which links through to some great information.)

Don’t go down there!

When something starts to become normalised – which is a great thing – it can become casualised in the lexicon. Then you start getting things like people saying “I’m so OCD” when they are talking about needing to have their cupboards organised ‘just so’. In reality that particular OCD can have you not able to leave the house for a week because something is a millimetre out of place and it you don’t get it just right someone you love will die horribly and it will be your fault.

The shitty thing is that you know these thoughts are utterly irrational, but it doesn’t stop you having them and it doesn’t stop you doing the thing to make them go away. It’s like watching yourself from the outside and being unable to do anything about it. Like screaming “Don’t go down there!” at the soon-to-be victim in a horror film as you helplessly watch them descend into the haunted basement. Casualising that experience hurts.

Ignorance rather than malice

As Paddy often says to me however, these things are usually said out of ignorance rather than malice. It’s hard to see that when you are in the middle of being upset and outraged, but most of the time it’s true.

One thing that illustrated this to me and gave me so much hope was actually an interaction in the comments section on, of all things, a car video on Youtube. Paddy’s an engineer and a bogan and often our evenings are spent with him watching people faffing about with car engines on the internet while I ignore him and read, write or kill zombies on my phone.

One particular evening during lockdown, when I was a little anxious and overwrought, I overheard a chap on one of Paddy’s videos talk about being “a little bit OCD” about something to do with the car he was working on. Often I let these things go but this time I roared “YOU ARE NOT OCD!”

Paddy stopped the video and said “do you want me to say something? I’m certain he wasn’t being malicious.” I told him not to worry about it and that Car Dude was lucky I was medicated and left it at that. Paddy went quiet for a minute then sent me an email and asked “is it okay if I post that in the comments?” I read it and nearly burst into tears.

* I really love your videos and it is fantastic that you are spotlighting the wonderful things that Kiwi innovation can do for us. You are an awesome guy and I really appreciated the service that you gave me in wellington. I have one small suggestion / request. I watch your videos in the evening when there is nothing much to watch on broadcast tv. Lets face it that is a lot of the time. My partner who is the most awesome person I have ever met and who managed to manage her mental illness to sail over 5000 miles around the the south pacific with me overhears what you say. She has struggled with OCD her whole adult life and when you say you are OCD about you FD it makes her feel belittled. I realize that is not your intention but please understand that this is an awful thing and people struggle with it in a way that we really can’t understand or thankfully never will. So please…… Be obsessive, passionate, focused …. or anything but please not OCD that is an awful disease that you would not inflict on your worst enemy.

Best regards

Paddy

*Identifiers have been removed

I said yes and the very next day Car Dude had replied saying that Paddy was absolutely right, he was definitely not trying to belittle anyone and that he would think about his terminology more clearly. He apologised to me and that apology is 100% accepted.

That was one small interaction between two blokes on the internet but it gave me a lot of hope that we can change the way we talk about things. Not just mental health, but all the things we need to change the way we talk about right now. It also showed me that speaking up when you feel uncomfortable actually helps. People don’t know what they don’t know and if you don’t tell them, then they never will – and if you do tell them, then it’s on them to think about what they say.

I know it’s not easy. I catch myself getting things wrong from time to time too. But the thing is, I catch myself, and I correct myself and if I hurt someone then I apologise. That is all we ask. If two Kiwi blokes with a mutual love of cars can do it, so can you.

And that is why what the people who spoke to Re: news did today was so important and why Re: News did such a great thing by running it in such a respectful and understanding manner. You guys, and every other Car Dude out there who speaks up or who listens, are all my heroes right now.

If you are looking for support here are a bunch of resources I blagged straight from the Re: article

National helplines

• Need to talk? Free call or text 1737 any time for support from a trained counsellor 
• Lifeline – 0800 543 354 (0800 LIFELINE) or free text 4357 (HELP)
• Suicide Crisis Helpline – 0508 828 865 (0508 TAUTOKO)
• Healthline – 0800 611 116
• Samaritans – 0800 726 666 
• Anxiety phone line – 0800 269 4389 (0800 ANXIETY) 
• Youthline – Free call 0800 376 633, free text 234, email talk@youthline.co.nz or Web chat from 7pm–10pm
• thelowdown.co.nz – or email team@thelowdown.co.nz or free text 5626 
• Anxiety phone line – 0800 269 4389 (0800 ANXIETY)