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by Emily

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.

I was diagnosed with obsessive compulsive disorder (OCD) when I was five years old. As I was diagnosed so young, I cannot remember a point in my life where OCD wasn’t present.

For as long as I can remember, I have felt anxious; for most of my life, I had no idea that others did not feel the same way. Looking back at my childhood, I remember repeating behaviors because they didn’t feel “right.” I remember lying awake, riddled with anxiety believing that situations that I had no control over were my fault. I remember repeating tasks certain ways so that I wouldn’t be “stuck” thinking about them. Once, on a family trip to the mall, I convinced myself I had seen something outside of the tinted car window. It took hours before my mom convinced me that it wasn’t real.

OCD really tightened its grip on me when I was 12 years old. I can vividly remember the boys next door laughing at my “blubber” as I bounced on my trampoline in a floral bikini. Up until that point I hadn’t thought twice about my body; however, at that moment everything changed: I decided it was time for a diet. The next five years turned out to be some of the most difficult of my life, as I battled with the challenging diagnosis of anorexia; I finally overcame the disorder at the age of 17. However, my battle with OCD was far from over.

During my late teen years, while I had accepted the fact that I had OCD, I still did not feel comfortable talking about it to my family, friends, or partners. By this time, my once physical compulsions had become mental compulsions; it was therefore difficult to explain to people around me what it was like to live with OCD.

During my early twenties, my OCD flared up again, becoming ever more sinister. I began questioning everything I said and did and replaying conversations and situations in my head over and over. Things went from bad to worse when I started experiencing intrusive thoughts. The thoughts only intensified as I tried to dig into their meaning. It felt as though I was sinking deeper and deeper into a life lost in thought. The intrusive thoughts intensified, leading me to experience panic attacks and chest pain. Each morning, I would drag myself to work and spend my lunch hour in the car crying or compulsively researching on my phone. I was having a hard time distinguishing my own thoughts from my OCD thoughts and started to question whether or not I really had OCD or if I was losing my mind.

During this period, I tried a variety of different therapists (including psychologists, psychiatrists, and social workers) and medications. Finding a therapist with expertise in treating OCD proved to be more difficult than I imagined it would be. I tried many different therapists before I even heard of terms such as exposure and response prevention (ERP) therapy or acceptance and commitment (ACT) therapy (both of which have proven to be very helpful to me). Fortunately, I have now found a great therapist who specialises in OCD. It also took a while to find a psychiatrist who would prescribe the medication that proved to be most effective for me: Anafranil; I have taken this for almost 3 years now and have found it to be such a game changer when it comes to reducing my OCD symptoms.

My experiences demonstrated that I had to be my own advocate in finding the correct treatment — this in fact took a number of years.

The most important messages I wish to convey to others living with OCD is:

  • OCD is not your fault. No matter what horrendous thoughts are running through your mind, you are not your thoughts; they do not define you or your values.
  • The path to healing isn’t always linear. Sometimes you may experience a few great months and then all of a sudden be hit with a really bad day and that’s okay. The path to living your best life isn’t always without resistance and setbacks so be gentle with yourself.
  • It is important to reach out to the OCD community. I have met some of the kindest souls from OCD support groups (both online and in person).
  • You are not a burden. You are not unlovable because of your mental illness. Make space in your life for the right people. They will love and support you in spite of your OCD.

My mom likes to tell me the story of my diagnosis. Apparently, I asked the doctor what was wrong with me, to which he replied: “Nothing; this is just the way you were made.” Upon returning to the car, my five-year-old self turned to my mum and said smiling, “See? I told you there was nothing wrong.”

Emily is a twenty-something living, working, and playing near her hometown in West Michigan. She works in the beauty industry and enjoys writing, photography, and practicing yoga. She hopes her story will inspire others who live with OCD and raise awareness about mental illness.

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