What it’s Like to Have OCD

When you get to the mirror and start doing and redoing and redoing to the point that you can't leave the house -- and miss life -- then it's a debilitating issue. -The longest it ever took me to do my hair was four hours. My spike would be like, it wasn't perfect -- like, that spot, it looks weird; over here, like my sideburns look weird, and everyone's going to laugh at me. You can't see OCD, so it really gets to me when people say, like, well, I don't see you anxious, I don't see you depressed, I don't see you doing things multiple times. It's not always very obvious. Most of the time, it's really secretive. -It's frightening to watch sometimes, depending on the compulsion, and you want to make it stop, just stop. Because as a parent, you want to fix things. And he can't fix this. -I'm Allison, I'm 14 years old, and I live with OCD. So, this is my room, and I have all my stuff here. Eeyore was always my favorite character, Winnie-the-Pooh, because I'm, like, the "glass half empty" kind of person. So I just felt like I understood him more, rather than the other ones, which are just like silly characters. And it feels like someone gets me. Discovering I Have OCD I first realized I had OCD in third grade. I would rewrite and reread, re-talk. I knew it wasn't normal because no one else was doing it, but I just felt like it had to be done. So, a normal day, I would say at least three hours are spent being anxious or doing compulsions in my head. A compulsion is a behavior that you do either mentally or physically to relieve the anxiety from the obsession or intrusive thought. Most of my compulsions are like pure "Oh," which means it's mental compulsion. So instead of tapping the wall 10 times, I count in my head ten times, and no one sees it. But it's definitely still there. The most I've ever done compulsions were, like, a day and a half without stopping. I was in fourth grade and my rewriting OCD got really bad, so I couldn't write without rewriting at least 10 times each word. I would write something and erase it, and write and erase, and it would get me really anxious, and then I would rip through the paper. And I would just, like, hide in the bathroom, try to, like, not be at school. And I would try to take as many sick days as I can off. My mom tried to explain to that teacher about OCD, like, multiple times, and my teacher just made everything worse. She would rip up my paper, she would throw it away. -Her teacher at the time... -Horrible. -...wasn't really aware of what OCD was, so she would address it by saying things like, "You just need practice in writing." -At the same time, I was getting made fun of for my OCD, 'cause I was rewriting so much. Everyone knew that, and everyone knew me as a person who rewrites. Then I remember this boy was rewriting a sentence because he messed up, and all the kids were like, "Oh, you got the Allison disease?" I tried to play it off as a joke, I'm like, "Yeah, haha, yeah," but when I got home I was crying to my mom because I don't want to be known as that -- I don't want to be known as the weird person. All my friends, they're in the regular school, they might fail a few tests, but they're okay with it. And for me, it's like, I have to be in a special school with teachers that help me 24/7. And it kind of makes me feel like I'm not independent and I can never do anything by myself. -So, the general idea -- what was the whole book about? If you had to put it into one sentence only? -Susanna, which is in a psych ward recovering from schizophrenia. -So it's girls in a psych ward trying to recover from...? -Mental illnesses. -Awesome. That would be your sentence. -This book is about what? -What is this book about? -Oh, yeah. So my OCD is spiking right now because I have to write exactly what my mom said, or else in my head I feel like it's gonna be wrong. So I would just do an exposure by not doing exactly. So I would just think of what I heard. And if it's not exact, then it's not exact. -Then I would go out of my way to not repeat it. -Exposure, or ERP -- exposure response prevention -- is exposing yourself to the anxiety, so you would do the opposite of what you're scared of. And then it slowly gets better. So this is my camera. Packing up my case causes me anxiety sometimes because it's like I have to do it perfectly, or else it's gonna get ruined or I'm going to lose something. So, like, it sounds like a normal fear, but it just goes so over the top that it takes me a long time to pack it up. It took me maybe like an hour and a half just to figure out where to put it without being so anxious. -A lot of people seem to think that if you just put things in the right order, that that is OCD, and you have everybody walking around, going, "Oh, I'm a little OCD, too." You're not. You're so not. -Everyone has intrusive thoughts, sometimes intrusive images, but it's not OCD. OCD is when you can never let go of it. It's causing you so much anxiety and it interferes with your daily life. -For Allison, everything has to be perfect, and perfect is a strange thing that doesn't exist. A Perfect Moment in Time -When I take the photo, I feel like this is, like, the perfect moment in time, like, I want to keep this forever. I just feel free that I could take as many as I want, they could be as horrible as they can be, just, I could just have fun with it. But when I download them all to my phone, the more photos I have to choose from, the more it, like, makes me anxious because I'm like, "But now there's so many," and what if one is better than the other, but I didn't choose one? So I'm going to just throw this away so it doesn't, like, stress me out. Usually it would take me a few minutes, and I would ask a bunch of people, like, which one do you like better? And when I like one picture better and they like the other one, it gets me, like, really stressed, because if it's not right, then there's something not complete about me. In the past, my OCD would be worse when something wasn't just right or perfect. Now it's more like reassurance. -Reassurance seeking is... Originally, it starts out very cute, but it develops into something that morphs out of control. When she was little, she used to walk around and say, "Do you love me?" And it's cute. You have a three-year-old asking you if you love them. You say, "Yes, I love you." And then that question would come up 150 times a day. And you think that you should answer them because, heck, your kid just asked you if you love them, but they need to make sure that they hear you. They need to be certain that they did it the right way. And that reassurance doesn't exist. Over the last 10 years, Allison has spent an enormous amount of time battling this illness with all types of medical professionals, including cognitive behavioral therapy, and exposure therapy, and medication coming into play. We have amazing therapists in the city, but they're extremely expensive -- and by "extremely," it pretty much takes an average salary of the American worker. We were lucky that there was a grant, so she did get some relief through the grant. But as of right now, I think the best course of medicine is herself. She does the exposures herself. She is making progress. -To go to gymnastics, I have to put it in a ponytail. When I would do the ponytail, that was when my OCD spiked a lot, and my routine would be, like, using the keratin mist. So... It smells a little bad, I'm sorry. I would use a lot of hair ties because I'd need it to be, like, the perfect amount of, like, tightness. I have to do two at a time. A few months ago, I had, like, really bad OCD about this. So to make it easier, I got, like, this shaved off, and I put, like, designs on it to make it look cute, and I only have half a head to deal with. So I made it a lot easier to conquer the OCD. -I guess everyone takes a while to do their hair. But I don't think it stops you from living. If this was six to nine months ago, she would have redone the ponytail countless times by now. In fact, we kind of do the opposite now. You go with as messy of hair as humanly possible. -I know... [Both chuckle] -And then, like, more of an exposure was to go out with my friends to go to gymnastics. So I have to go to places that, like, people can judge me at. Finding a Place Where I Belong -Allison has found a place where she belongs. She enjoys gymnastics. She has always been very strong. So gymnastics has been one of those places where she can use that strength and not use her brain. So she's able to go in there and just exert all the energy that she has. Ali, I think, is going to be involved in the OCD