In 2012, Derek Aspacher, my husband, was literally sick with anxiety. I could tell something had been off for months, but during the last several weeks of this period he began having full breakdowns, sometime sobbing in my arms as I tried to calm him down. I was flabbergasted at first, struggling to understand why my husband — typically a timid, stoic person — was suddenly torn apart.
After Derek decided he couldn't deal with it anymore, we went to the hospital. They diagnosed him with obsessive compulsive disorder, an anxiety-causing disorder that leads to obsessive, overwhelmingly negative thoughts.
Since then, we have devoted a lot of time learning about OCD and how he can cope with it. Besides the occasional bad episode, things are now great. But it still bothers us how widely misunderstood OCD is in the media and among the general public — sometimes in a way that can actually make Derek's OCD worse.
I talked to Derek about his OCD. Here are seven things he told me people should understand, from his perspective.
1) OCD isn't just about keeping everything clean
The common media portrayal of people living with OCD is that they need to clean everything or have rituals — checking a door lock or light switch, for example — that they must repeat on a regular basis. This misses what OCD is actually about: it's not about the rituals themselves, but what makes the rituals feel necessary.
Before I go to bed or leave the house, I have to check all the knobs on the stove to make sure they're turned off. I have to touch every knob on the stove to make sure it's not in the wrong position. This is something I have to do. If I leave the house without checking those knobs, whatever I'm setting out to do will be ruined, overwhelmed by anxiety and dread.
I don't do this because I enjoy checking the stove or because the mere act of checking the stove gives me relief. I do this because I know that if I don't check the stove, the house will catch on fire and the person and things I care most about will go down in flames — and it will all be my fault. What would probably be a small, brief worry for everyone else for me turns into a potential nightmare scenario that will ruin my life.
2) There is no established trigger for OCD
If I'm going through a bad phase on a given week or even for a couple of weeks, pretty much anything can trigger it. A bout of anxiety can turn into a two-week-long panic attack. One thought can grow into an obsession or worse.
One time, I was driving and hit a bump in the road. In the span of a few minutes, I convinced myself that I had actually run over and killed a child — even after clearly seeing, in my rear-view mirror, that I had hit no one. I ended up driving around the block for half an hour just to verify that I hadn't hit anyone. When I forced myself to go home, I had to check on Google to make sure no one had reported a hit-and-run.
Obsessive thoughts don't even have to be grounded in actual events. For as long as I can remember, I've worried about getting cancer. There's no history in my family that I know of that should make me worry about the disease. But every potential lump I feel in my body, from a canker sore to an imaginary feeling in my armpit, can turn into a serious fear about cancer.
I imagine most people not living with OCD would just shrug off these thoughts as crazy. "Oh, that was a bump in the road." "Oh, that's just a canker sore." For me, it almost immediately turns into a crisis that I have to figure out how to deal with emotionally.
3) My OCD makes it so I can't trust my own mind
When I tell people about my obsessive thoughts, they'll usually tell me — if they're aware of my diagnosis — that these thoughts are just part of my disorder. I figure it's their way of trying to calm me: "Hey, you have OCD, and you know this is just part of it, so it should be easy to let it go!"
The thing is, I know these thoughts are irrational. One way I look at it is that I have two people in my mind: one is the actual me, and the other is the constant voice of OCD and anxiety. I want to make the OCD voice go away, but part of it is always there. Sometimes I can quiet it down, but it's like constantly dealing with someone else in my own mind whose opinion has equal weight to my own — or more depending on how anxious I am. It's a constant internal debate, and I know it's not how my brain is supposed to work.
My first big breakdown in 2012 occurred due to constant, ridiculous fears about whether I'm a pedophile. I had been watching a TV show that featured a teenage girl experimenting with her sexuality. This led to months of obsessive thoughts: "Oh, that makes me uncomfortable. Wait, why does that make me uncomfortable? Am I trying to suppress bad feelings? Am I a pedophile?" I would, of course, never dream of hurting anyone — much less a child. But no amount of rationalization seemed to stick. My own mind had turned against me.
When I finally decided to seek medical help, German, his mom, and I went to the hospital. I explained my thoughts to a doctor working there. She told me I may have OCD. Even this medical professional with a sound opinion couldn't calm my fears. I asked, "So you don't think I'm a pedophile?" She said, "No, I don't think you're a pedophile. I've worked with some before. You should look into OCD." After six months of therapy and years of taking my medication, I can now say these thoughts were absurd. But back then, the voice in my head had convinced me otherwise. I had to realize I sometimes can't trust my own mind to overcome my fears.
4) OCD-caused anxiety isn't a constant for everyone
Like other anxiety disorders, OCD can come and go depending on what's going on in my life or whatever is happening in my brain. On some days, literally anything — like that bump on the road — can trigger an obsessive thought. On others, I can more easily dismiss the idea that one innocuous action will lead to my entire life's collapse. Most days are a fluctuation in between both extremes.
The bad days aren't necessarily random, but they can feel that way. Some days, things I see around me — whether it's on the news, TV, or my personal life — will trigger a negative thought about myself. Sometimes I can shake it off. Other times it builds into an obsession; the mere reference of the topic will make me self-conscious to the point I can't think about anything else — and I make myself sick with worry.
The medication I take (Zoloft) makes these moments last for shorter periods of time and makes them easier to prevent. But these episodes can still happen — and they can be just as intense as they've always been.
It's important for people to realize this because there are days when I'm going to say I want to lie in bed and do nothing because my brain is out of control. And they could be followed by days in which I'm ready to go out with family and friends and have a good time. I'm just not in control of when it all happens.
5) The anxiety weighs everything down
The reason I have to stay in bed on some days is because literally everything — from cooking to playing video games — becomes much harder when my OCD is at its peak. If I'm doing anything that makes my brain active, it's much easier for an obsessive thought to creep in and take over. That may seem counterintuititive — distractions should, in theory, make it easier to work off obsessive thoughts. But these thoughts are so powerful that it's impossible for me to think about anything else, rendering distractions meaningless.
I don't have a job, but I spend most of my days on chores (cooking, cleaning, shopping, taking care of my pets) and enjoying my hobbies (video games, TV, movies, working out). Even these menial or fun activities can turn overwhelming, because they become more about debating my own mind than doing the task at hand.
So I'm not lying in bed or refusing to go out because I'm lazy; I'm doing it because it shuts down my brain and puts aside the bad thoughts for just a little while.
6) I can rationalize away the bad thoughts, but they usually come back
Dealing with my thoughts would seem a bit like an internal monologue to an outsider. I essentially have to debate with my own mind — until I find an argument that sticks and lets me push down the obsessive thought.
Am I going to burn down the house if I don't check the stove and oven again? No, I've already checked tonight. I even touched the stove and oven knobs to make sure they're in place. But maybe I hit the knobs out of place while touching them. Okay, I'll check one more time. Then it'll be fine, I think. Or maybe not.
But just because I tame an obsessive thought one night doesn't mean it will be gone forever. If I'm having a particularly bad thought, it's very likely it will all come back the next day — and the rationalization that calmed the thought the day before will be less effective.
For me, the only tactic that really works to control my OCD is grinding down the obsessive thought over a long period of time. To do that, I have to look at literally the worst possible scenario — say, how long I would be in prison if I actually ran over a kid — and just come to terms with it. This means I'm actually convincing myself that the worst thing will happen, then convincing myself that it's something I can cope with. I'll have to repeat these rationalizations over and over again sometimes, but they'll eventually stick and allow me to relax.
7) Don't make me convince you I have OCD
One of the worst things people do is question whether I have OCD at all. "I don't see you cleaning very often," I often hear. "Maybe you don't have OCD."
This can actually make my OCD worse, because one of my main coping mechanisms for dealing with OCD is knowing I have OCD. Questioning whether I actually have it — and making me explain that I really do have OCD, when I'm usually suffering from self-doubt brought on by obsessive thoughts — only makes me question myself further. That's the last thing I need when I'm already anxious and dealing with thoughts that aren't totally under my control.
The best thing you can do for me is not doubt my OCD and instead ask me what you can do to help. Be human. Be kind and understanding. The last thing someone ridden with self-doubt and anxiety needs is more doubt.
German Lopez is a staff writer for Vox.com. Derek Aspacher is his husband.