Skip to playerSkip to main content
  • 2 weeks ago
Obsessive Compulsive Disorder (OCD) is a mental disorder that often involves intrusive thoughts, anxiety, and ritualization. While millions suffer from OCD, the disease is often misunderstood by the general public and misrepresented in the media and pop culture. 14-year-old Allison is an OCD sufferer who shares her personal struggles in hopes of destigmatizing the illness and creating a support community for others affected by OCD.

This video was originally published on Vice in 2020 and is being repurposed by Refinery29.

ABOUT REFINERY29
Refinery29 is a modern woman's destination for how to live a stylish, well-rounded life. http://refinery29.com/

RELATED CONTENT
Living With Paranoid Schizophrenia
https://youtu.be/qxbnx3KiH9E
My Life With OCD & Germaphobia
https://youtu.be/aO5sVfhOm0U

SUBSCRIBE TO REFINERY29
Subscribe to the Refinery29 channel: http://bit.ly/subscribe-to-r29
Follow Refinery29 on Instagram: https://instagram.com/refinery29/
Follow Somos on Instagram: https://instagram.com/r29somos/
Follow Unbothered on Instagram: https://instagram.com/r29unbothered/
Transcript
00:01When you get to the mirror and start doing and redoing and redoing to the
00:05point that you can't leave the house and miss life, then it's a debilitating issue.
00:12The longest it ever took me to do my hair was four hours. My spike would be like it wasn't
00:19perfect and like that spot it looks weird. Over here like my sideburns look weird and
00:26everyone's gonna laugh at me. You can't see OCD so it really gets to me when
00:32people say like well I don't see you anxious, I don't see you depressed, I
00:35don't see you doing things multiple times. It's not always very obvious. Most of the
00:41time it's really secretive. It's frightening to watch sometimes depending on the
00:47compulsions and you want to make it stop, just stop. Because as a parent you want
00:53to fix things. And you can't fix this.
00:57I'm Allison, I'm 14 years old and I live with OCD.
01:12So this is my room and I have all my stuff here. Eeyore was always my favorite character in Winnie
01:19the Pooh.
01:20Because I'm like the glass half empty kind of person. So I just felt like I understood him more.
01:27Rather than the other ones which are just like silly characters. And it feels like someone gets me.
01:35I first realized I had OCD in third grade. I would rewrite and re-read, re-talk. I knew it
01:45wasn't normal because no one else was doing it.
01:47But I just felt like it had to be done.
01:52So a normal day, I would say at least three hours are spent being anxious or doing compulsions in my
02:01head.
02:02A compulsion is a behavior that you do either mentally or physically to relieve the anxiety from the obsession or
02:12intrusive thought.
02:14Most of my compulsions are like pure O, which means it's mental compulsions. So instead of tapping the wall ten
02:20times, I count my head ten times.
02:24And no one sees it, but it's definitely still there. The most I've ever done compulsions were like a day
02:30and a half without stopping.
02:33I was in fourth grade and my rewriting OCD got really bad. So I couldn't write without rewriting at least
02:41ten times each word.
02:42I would write something and erase it and write and erase and it would get me really anxious and then
02:48I would rip through the paper.
02:50And I would just like hide in the bathroom trying to like not be at school and I would try
02:56to take as much sick days as I can off.
02:59My mom tried to explain to that teacher about OCD like multiple times. And my teacher just made everything worse.
03:05She would rip up my paper, she would throw it away.
03:07Her teacher at the time wasn't really aware of what OCD was. So she would address it by saying things
03:14like you just need practice in writing.
03:17At the same time, I was getting made fun of for my OCD because I was rewriting so much. Everyone
03:24knew that and everyone knew me as a person who rewrites.
03:27Then I remember this boy was rewriting a sentence because he messed up and all the kids were like, oh,
03:32you got the Allison disease.
03:34I tried to play it off as a joke. I'm like, yeah, haha. Yeah. But when I got home, I
03:38was crying to my mom because I don't want to be known as that. I don't want to be known
03:42as the weird person.
03:45All my friends are in a regular school. They might fail a few tests, but they're okay with it.
03:51And for me, it's like I have to be in a special school with teachers that help me 24-7
03:59and it kind of makes me feel like I'm not independent and I can never do anything by myself.
04:06So the general idea, what was the whole book about if you had to put into one sentence only?
04:13Susanna, which is in a psych ward recovering from schizophrenia.
04:18So it's girls in a psych ward trying to recover from?
04:23Mental illnesses.
04:24Awesome. That would be your sentence.
04:27This book is about what?
04:29What is this book about?
04:31Oh, yeah. So my OCD is spiking right now because I have to write exactly what my mom said or
04:38else in my head I feel like it's going to be wrong.
04:40So I would just do an exposure by not doing exactly. So I would just think of what I heard.
04:46And if it's not exact, then it's not exact.
04:49And I would go out of my way to not repeat it.
04:53Exposure or ERP, exposure response prevention, is exposing yourself to the anxiety. So you would do the opposite of what
05:01you're scared of. And then it slowly gets better.
05:06So this is my camera. Packing up my case causes me anxiety sometimes because it's like I have to do
05:13it perfectly or else it's going to get ruined or I'm going to lose something.
05:17So like it sounds like a normal fear, but it just goes so over the top that it takes me
05:22a long time to pack it up.
05:23It took me maybe like an hour and a half just to figure out where to put it without being
05:28so anxious.
05:30A lot of people seem to think that if you just put things in the right order, that that is
05:34OCD. And you have everybody walking around going, oh, I'm a little OCD, too. You're not. You're so not.
05:41Everyone has intrusive thoughts, sometimes intrusive images, but it's not OCD. OCD is when you can never let go of
05:51it.
05:51It's causing you so much anxiety and it interferes with your daily life.
05:57For Alison, everything has to be perfect. And perfect is a strange thing that doesn't exist.
06:05When I take the photo, I feel like this is like the perfect moment in time. Like I want to
06:11keep this forever.
06:13I just feel free that I could take as many as I want. They could be as horrible as it
06:16can be. It's just, I could just have fun with it.
06:21But when I download them all to my phone, the more photos I have to choose from, the more it
06:28like makes me anxious because I'm like, but now there's so many.
06:31And what if one is better than the other, but I didn't choose one. So I'm going to just throw
06:36this away so it doesn't like stress me out.
06:39Usually it would take me a few minutes and I would ask a bunch of people like, which one do
06:44you like better? And when I like one picture better and they like the other one, it gets me like
06:48really stressed.
06:49Because if it's not right, then there's something not complete about me.
06:53In the past, my OCD would be worse when something wasn't just right or perfect. Now it's more like reassurance.
07:03Reassurance seeking is originally it starts out very cute, but it develops into something that morphs out of control.
07:11When she was little, she used to walk around and say, do you love me? And it's cute. You have
07:16a three year old asking you if you love them. You say, yes, I love you.
07:19And then that question would come up 150 times a day. And you think that you should answer them because,
07:26heck, your kid just asked you if you love them.
07:29But they need to make sure that they hear you. They need to be certain that they did it the
07:33right way. And that reassurance doesn't exist.
07:38Over the last 10 years, Allison has spent an enormous amount of time battling this illness with all types of
07:46medical professionals, including cognitive behavior therapy and exposure therapy and medication coming into play.
07:54We have amazing therapists in the city, but they're extremely expensive. And by extremely, it pretty much takes an average
08:03salary of the American worker.
08:05We were lucky that there was a grant. So she did get some relief through the grant. But as of
08:12right now, I think the best course of medicine is herself. She does the exposures herself. She's making progress.
08:23To go to gymnastics, I have to put it in a ponytail. When I would do the ponytail, that was
08:27when my OCD spiked a lot. And my routine would be like using the keratin mist.
08:35So it smells a little better. I'm sorry. I would use a lot of hair ties because I'd need it
08:42to be like perfect amount of like tightness. I have to do two at a time.
08:47A few months ago, I had like really bad OCD about this. So to make it easier, I got like
08:53this shaved off and I put like designs on it to make it look cute.
08:56And I only have half a head to deal with. So it made it a lot easier to conquer the
09:01OCD.
09:03I guess everyone takes a while to do their hair, but I don't think it stops you from living. If
09:09this was six to nine months ago, she would have redone the ponytail countless times by now.
09:15In fact, we've got to kind of do the opposite now. You go with as messy of hair as humanly
09:20possible.
09:20I know. And then like more of an exposure was to go out with my friends to go to gymnastics.
09:27So I have to go to places that like people can judge me at.
09:31Allison has found a place where she belongs. She enjoys gymnastics. She has always been very strong. So gymnastics has
09:40been one of those places where she can use that strength and not use her brain.
09:45So she's able to go in there and just exert all the energy that she has.
09:52Allie, I think, is going to be involved in the OCD community forever. I think that she'll find work in
10:00that space because it seems to bring her joy to help others.
10:04So this was a sign that I made. It was just a few weeks ago, actually. I went to DC
10:11for an OCD and mental health walk.
10:14I'm active on social media and I advocate for OCD and mental health in general. It helps me because I
10:22have a great community around me that makes me feel like I belong somewhere.
10:26She inspires me every day. She gets up and she battles the same demons and somehow she finds a way
10:33to just do it. It's amazing to watch. I don't think I could do the same.
10:39I don't think I'll ever be cured of OCD. It's a lifelong thing. New OCDs pop up. It could be
10:46one day not even there and then the next day it's there and it's full blown really, really bad.
10:51And you really just have to fight it back a day at a time.
11:09you
11:11you
11:12you
Comments

Recommended