I saw an OCD meme I wanted to share with K the other day. I told him so, and he automatically responded, “I don’t even want to freaking hear about it.” He’s so used to shutting people down when they attempt to talk OCD. I pushed my phone in his face, and his expression softened.
“Well, it’s about damn time that we took the meme world back from them,” he exclaimed.
He and I see a lot of OCD memes. They ebb and flow on my Facebook feed every few months, and I’m witnessing an upsurge again. Most of these memes are wrong and slightly offensive to me just because they are filled with untruths. They are very offensive to K—who, of course, has all the right in the world to be offended. He feels as if they invalidate the horrible nature of what he went through and all of the progress he’s made.
In the past six months, I’ve been appalled to realize how often we use OCD as an adjective, how often we trivialize it in jokes, how often we pass off incorrect information about the disorder without even realizing it. My kid comes home and talks about the kids who—while trying to show compassion and empathy—discuss how they have OCD some days too, how they are neat freaks, too, how they think the public bathrooms at school are disgusting too, how they can’t eat red Skittles, either.
He responds with, “Oh, wow, that’s wild,” and “That must be rough,” and all the other things one could say when they just want to shut down the conversation, but in a polite way.
I’ve started calling people on it. I’ve done it nicely (As in, “Hey, would you consider taking this down? K and I have learned over the last few months that this is not really OCD, and it can really project the wrong image of his condition. I don’t want to start a fight, but I do want to start a discussion, so I’m hoping we could talk about it further.”), but I’ve lost more than one Facebook friend this way. Often, these people tell me that they have OCD, too, and that my taking offense is offensive to them. I’ve only had one who responded in any conversational way.
Why do I call people on it? Well… I’m not their therapist, so I don’t know what they’ve been diagnosed with, but I don't understand why someone with the disorder would want to post untruths… It's mostly because all I see these days is memes on OCD, and I’ve never seen a meme for depression or schizophrenia or dissociative disorder, and I wonder why OCD is fair game.
Why is making fun of OCD fair game? Can anyone explain this to me? I know I’m sensitive to the issue, but… Can anyone tell me where the Tumblr blogs making fun of psychosis are? I didn’t think so.
K is actually doing really well these days. Not that the obsessions are gone (the medication does turn down the volume significantly), and not that the compulsions are completely gone either (the kid is always going to wash his hands, and he’s always going to let someone else open a door for him if he can), but K can function. Manage.
Live. My kid can live again.
Back in August, K could not touch a door handle, could not touch a bathroom floor, could not touch others, could not have his things touched by others, could not have people in his room, could not touch the bottom of his shoes, could not look directly at the screen of his phone, could not leave anything plugged into an electrical outlet, could not leave his room without repeatedly opening and closing his dresser drawers, could not go to bed without setting his alarm clock nine times… this is not even a comprehensive list of what my kid was doing…
Most importantly, in August, K could not eat. My son could not eat. His food was likely contaminated with deadly bacteria, and it wasn’t the prospect of his own death that bothered him so much, but the idea that he would inadvertently pass a deadly disease to his brother that prevented him from eating. The rituals he performed to keep us all alive and well each day was in excess of four to five hours each day, and that didn’t even count all of the things he cleaned or the verbal checking he would do with me each day. The rituals were a huge problem, but they didn’t even touch the fact that my kid couldn’t eat. He was hungry. He wanted to eat. But he couldn’t bring himself to do it, even though he knew the obsessive thoughts were irrational.
My kid has put 15 pounds back on his skinny frame in the past five months. He can eat again.
So this is the point where I always want to ask exactly how preferring alphabetical order or avoiding red Skittles is OCD… I understand categorizing and magical thinking, and the roles they can play in OCD, but having one thing that you find bothersome does not an OCD diagnosis make.
K is to the point in his treatment where exposure-response therapy is over, and it’s all about relapse prevention. He knows he can do certain things without getting sick or us dying. He knows the coping skills to manage intrusive thoughts when they strike. Now we need to learn how to keep it from ever getting as bad as it was again.
He’s not cured. There is no cure. He will never be ‘normal’. We had a baseline of manageable behavior we wanted to reach, and for the most part, we’ve reached it. OCD will always be a specter in the back his mind, waiting to rear up. It will come back. He will have other episodes. It will be there tomorrow, and it will be there twenty years from now. The question is, will he be able to recognize it, mitigate it, and find the help he needs to move past it? That’s what we’re working on now. And this, by far, is the hardest part.
Part of what he wants to do (and I as well, to be completely honest) in this relapse prevention segment of treatment is talk to others about what OCD really is, what it really means, and how debilitating it can be. He doesn’t know how he wants to go about doing this yet, and I’m not going to push him. I’ll let him come to his own decisions on how to best approach that. Still, just the fact that there was an OCD meme on an OCD Tumblr written by someone who actually has the disorder makes a world of difference, and gives him something to consider.
If you would like to check out the Tumblr I mentioned, you can find it here.