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By Alex R.

I have recently been diagnosed with severe pediatric acute-onset neuropsychiatric syndrome (PANS) and obsessive compulsive disorder (OCD). When I suffered from my OCD symptoms, I hated my life. I was not able to do simple tasks – such as walking from my bedroom to the kitchen, brushing my teeth, or eating and drinking – without feeling immense pain. I have decided to share my story as I want to help others with OCD.
These are the top seven things that I think everyone with OCD should know (and that I wish I had known):

1: You are not alone
Millions of people all over the world suffer from OCD, and many more are suffering from other mental disorders. Approximately one in every 100 children worldwide has OCD.

2: You can ask for help from your peers
Ask for help and you will get it. For example, there was a period when I was late to class every day and could not even perform simple tasks such as writing. However, once everyone realized what was happening, all of my friends, teachers, and even classmates I didn’t know, rushed to help me whenever possible. My classmates would help me write down my homework assignments, and there was even a teacher who volunteered to write down my math test answers when I dictated them to her.

3: Don’t feel ashamed
OCD is not your fault and it is not something to be embarrassed about. What you’re going through is pretty normal, and no one has the right to be rude to you because of what’s happening.

4: See a medical professional and get proper treatment
If you haven’t done so already, ask your parents to make an appointment to see a professional who is trained in the diagnosis and treatment of OCD. You or your parents shouldn’t be afraid of trying prescription medication or therapy. If you don’t receive treatment, your OCD could worsen. The only reason my OCD became so bad was that I waited several months before receiving treatment. Your doctor or therapist will advise which treatment they believe is best for you.

5: ‘Challenge’ OCD
One of the most important things I learned in psychotherapy was that I could ‘challenge’ OCD. Think about it this way: OCD is your brain sending a false alarm to your body to fix something that’s already fine. It is like a big bully inside your head. The way to ‘challenge’ the anxiety that causes your behaviors is to give yourself even more anxiety. Let’s say you step in mud and get really worked up about washing all of it off. Instead of washing your skin for hours until you feel it’s clean, try stepping in the mud again! Do the opposite of what your OCD is telling you! This is really hard, but try being really brave about it. Surprisingly, this is the key to tricking your brain into thinking that you don’t actually need to do what OCD is telling you.

A note to parents: give your kids a reward system if they challenge OCD. Do not punish your child for doing a compulsion or a ritual. If you punish your kids — or allow them to punish themselves for giving in to OCD — all you are doing is making the OCD worse.

6: Enjoy what you can in life.
Even when my OCD was on at full blast, doing things that I enjoyed – such as going on vacations, watching movies, and spending time with friends –  distracted me from the OCD and made me feel a lot better.

7: Your life will get better
Before I received treatment, every day, I would ask my mom, crying, “When will my life get better?”

I remembered a time when I had enjoyed life and it felt normal. I wanted to have a fun, normal life again. I wanted my life back. Finally, I received treatment, and slowly I was able to ‘challenge’ the OCD; I would try not to give into the urges and as a result they became less frequent. The dark void gradually lifted and I started being able to do the things I used to do; I felt like myself again. What kept me going? I knew deep down that life would get better.

My story has a happy ending and if you take the necessary measures, I believe that yours will too.

Alex R. is thirteen years old.

This story is part of our blog series called “Stories from the OCD Community.”  Stories from the community are submitted and edited by Toni Palombi. If you are interested in sharing your story you can view submission details at www.iocdf.org/ocd-stories.

3 Comments

  • Bridget Monteiro

    How inspiring these young men and women are sharing their stories. SO EMPOWERING! My son is now 25 and doing very well thank s to McLean Hospital. Saved his life. Life does get better, with love, education, therapy and family support.

    Reply
  • Thank you for sharing your story! It is nice for kids to hear they are not alone.

    Reply
  • Sherry

    Bravo!!! Thank you for bravery. Our daughter was also diagnosed with PANS and suffers from extreme anxiety and OCD. She has felt so ashamed, alone, and helpless. I will share your story with her. You are an inspiration!

    Reply

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