6 Lessons Living With OCD Has Taught Me

Obsessive-compulsive disorder (OCD) is always keeping me on my toes, but here are a few things I’ve learned along the way.

1. You might have OCD and not know it.

I’ve had OCD for 27 years by best estimates. I’ve known about it for two and a half years. How does that even happen? Well, it’s not straightforward to diagnose. According to the International OCD Foundation, it takes on average 14 to 17 years for people to get diagnosed and start treatment. I got diagnosed (and misdiagnosed) with plenty of other mental illnesses on the way to my OCD diagnosis, but it took 25 years from the onset of my OCD and 13 years from the time I started seeking help for my mental health to get the right treatment.

2. It doesn’t get bad overnight.

OCD is sneaky. It may start out as anxiety, then a few maladaptive coping mechanisms to deal with the anxiety, and before you know it you’ve constructed a complicated system for deciding which food is “safe” which makes every meal a living nightmare, you’re covered in scars from skin picking and your home has turned into something out of an episode of “Hoarders.” No one wakes up one day with full-blown compulsions.

3. It’s not all cleaning and perfectionism.

Yes I used to believe that’s what OCD was about too: cleaning and perfectionism. While that is partially true, it barely scratches the surface on the variety of obsessions and compulsions you can have with OCD. That misconception, which is heavily reinforced by the media, is another reason it takes people so long to recognize they might have OCD. I never once thought I had OCD because I am a hot mess; anyone who has visited my home can tell you I’m not a compulsive cleaner. But that’s an OCD thing too.

4. The obsessions can be dark.

The part of OCD that no one likes to talk about are the “taboo” subtypes of OCD such as harm and suicide. But these types need to be talked about because they are common and incredibly isolating. How do you tell someone that the reason you’ve hidden all the kitchen knives is because you’re obsessing that you’re going to stab someone with them? Or that you can’t change your baby because you’re obsessing that you’re going to sexually abuse them? Or that you’re getting rid of all the suicide methods in your house because you’re obsessing that you’re going to try to kill yourself? It’s important to note that people with these obsessions are not dangerous. I’ve had both harm and suicide obsessions before and the best way I can describe it is like having someone repeatedly telling you to do something that goes against every fibre of your being. You don’t want to do it, and are horrified by the idea of it which is why the obsessions cause so much distress.

5. OCD is always changing.

OCD is crafty; it adapts to “fit” your life circumstances. Over the years, I think I’ve experienced nearly every subtype of OCD — contamination, sexuality, relationship, scrupulosity, existential, perfectionism/always right. It likes to complement whatever life stage I’m at. For the last few years, I’ve been dealing with ongoing health problems, and contamination OCD has taken center stage, but recently I started working again after five years of unemployment because of those health problems and contamination OCD is starting to take a back seat to perfectionism/always right OCD.

6. You never really beat OCD; you just get better at managing it.

This was the hardest thing to terms with. OCD is for life. There is no cure for it; you just learn how to manage it. You will never reach a point where you are 100% free from OCD, and recovering from the damage it has already caused is not a linear process. When you first start treatment — in particular exposure and response prevention (ERP) therapy, the gold standard for OCD — things get much, much worse. It feels counterintuitive, then it flips and suddenly you’re feeling stronger, like maybe you can tame OCD after all. You can truck along for months, even years like that, slowly gaining ground over your OCD, feeling like a champ. Then boom, life happens, you let your guard down and those obsessions start taking back territory. It feels like you’re back at square one, and it’s demoralizing. But over time, you get better at spotting the signs, you react faster, you minimize the damage and you come to accept the fact that OCD is always waiting to strike.