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Today’s blog is by Ryan, age 12, a 7th grader in New Jersey who wanted to share her experiences of living with OCD. Thank you to Ryan for sharing her story!


When I was first diagnosed with OCD at the very end of 2015, I was, to be honest, shocked. My struggles were nothing like that of an obsessive compulsive person… or so I thought. Previously, my therapist thought it was GAD (generalized anxiety disorder), and I perfectly agreed with that. I was drowning in a sea of anxiety, just barely keeping my head above water… but when she said I had OCD, I was utterly and completely confused. Before long, I would realize that OCD comes in many forms, and it had been haunting me for three years.

After my official diagnosis, I was started on medications to help my OCD, but instead, I went down a big hill on the emotional rollercoaster I was riding. I never knew how I would wake up. Some days, I woke up so mentally exhausted from arguing with the thoughts all day that I felt nothing at all, walking around like a zombie all day at school. We soon figured out that I had “harm OCD” — my obsession was about accidently hurting myself or others and my compulsions were to check with my parents that I wouldn’t harm anyone and to test my limits by leaning over the balcony in my house. I (metaphorically) came crashing down and hit rock bottom, harder than I ever expected, in mid-January.

OCD is like having a bully stuck in your head that nobody can see. Soon, school became a struggle. Every door had a sign with a suicide hotline number written across it, which would send a million thoughts racing through my head. What if you ever have to call that number? Even worse, what if you don’t and you really hurt yourself? What will Mom and Dad and my siblings do when I die? There were images too. Horrible images of my funeral and of a knife repeatedly stabbing into my chest with my own hand on it. One day I ran to lean over the balcony about 40 times. That day, I had to go to the local psychiatric hospital. It was Hell on Earth for the short time I was there, but luckily I didn’t have to stay. I’m sorry, I know this is gory but OCD doesn’t deserve to be sugar-coated. If we want awareness and a cure, it has to be told as it is.

Since I wasn’t getting any OCD-specific treatment, I soon found myself with millions of thoughts in my head, and no way to handle them. I simply fell into the trap of obsessive thoughts, letting them contain me and keep me from enjoying everything I used to love. I had no key to let myself out of this trap. So I continued to drown in that sea of worry. Luckily, there was a lifejacket: a youth behavioral health program to keep me just above the waves.

Soon though, I wasn’t going to school anymore. I was instead going to a program. I was part of the children’s program and although it was partially helpful for relaxing and easing some of the anxiety, it was not specific to my issue. There were kids there with anger, depression, all sorts of anxiety, but nobody else with OCD. However, the therapy part of the program was soon doing more hurt than harm. I was so triggered by many of the things they said that I ended up spending my whole time in the break room.

So, in hopes of some other way to treat the doubt disease, we found an amazing psychologist. I started ERP (Exposure Response Prevention), and soon I was, to some degree, controlling it. I was, by no means well, but certainly better than the dark place I was in in January. My heart hurt like no pain I had ever experienced before, my head turning more and more fearful and hopeless with depression.

Then, in the middle of March, I began to see the rainbow in the gloomy storm I was living in. I suddenly had a fierce urge to get better (although I sometimes felt like giving up). Not only did I personally want to get better, but I wanted others to get better too. I wanted to raise awareness. I wanted to find better treatments. I wanted to do something great.

Now here I am, still in the dismal mist of depression and OCD, but certainly heading in the right direction. I am confident that I will get better, because now I can see the light at the end of the dark tunnel.


Will you support the IOCDF’s Campaign for Hope to help kids like Ryan find the rainbow after the storm? Please make your secure online gift today at www.iocdf.org/donate-C4H. Each year, the Pediatric Campaign 4 Hope raises critically needed funds for the International OCD Foundation’s pediatric programs and outreach efforts. The combined support of our donors helps families and kids to cope with the confusion, doubt, and fear that is unfortunately part of living with OCD or a related disorder. Our programs help to educate and provide access to desperately needed resources. A generous donor has agreed to match all gifts up to $50,000 for this important cause. Donate today to have your gift doubled: www.iocdf.org/donate-C4H.

4 Comments

  • Carla Stucky

    Dear Ryan, thank you for your vulnerability in sharing the very real struggle OCD can become. Your story is familiar in many ways and just by sharing it you have already helped and touched lives. Keep fighting, what you are battling is strong but you and God are stronger!

    Reply
  • Kaitlyn

    Dear Ryan,

    Your story has many of the same points as mine but I never thought OCD started so strong so young. I’m glad you’re on your way to getting better. At 26 I hit my breaking point and went willingly to a facility, they put me in an outpatient program and like you it was a mixed bag of people.Four weeks and they never changed my meds and I found even more things to fear and obsess about but also new techniques like meditation. When I got back to my therapist she asked if I felt better and I honestly said no just have new techniques and fears. After that I got a new psychologist and for weeks they played with my medication till we got to an median. I’ve come clean with my parents and talk with my therapist once a week psychologist every other. Can’t say I see things getting better a lot but at least I haven’t had a major relapse and there are some improvements. Thank you for sharing your story one day I want a triumphant one like yours to write down for others=)

    Reply
  • Shannon

    Ryan- Wow, you are so brave! I have been recently diagnosed with Harm ocd at the age of 39 and it has been a ride, one I would love to get off, but I’ve found treatment through ERP has helped tremendously, and just reading others stories about it. It can be such an isolating illness sometimes. Thank you for sharing your story with us and please know you have someone pulling for you in Georgia!

    Reply
  • Rita

    Dear Ryan,

    Thank you for being so brave to share your story. I am the Mom of a boy with ADHD/OCD and you have giving me insight to what he must feel at times but, is hard for him articulate as a 8 year old. Most of all, thank you for not sugar coating it as the goal is learn how to manage the OCD and helps to hear that my son is not alone.

    Reply

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