Updated: Dec 8, 2020
Obsessive-Compulsive Disorder (OCD) is an anxiety disorder that occurs when a person gets caught in a cycle of unwanted and intrusive thoughts. These thoughts trigger distressing feelings and causes the person to feel driven to engage in repetitive behavior, compulsions.
Read Hillary’s story below on her daily struggles with OCD and how she is balancing a normal life with the disorder.
Symptoms of OCD
In 1988, I woke up a different kid, overly concerned with germs and death. These thoughts led me to have mantras I would say before bed to keep everyone safe, walk back and forth, repeat nearly every move I made. I would withhold bad grades from my parents, not because I feared a consequence, but the bad grade would reflect that I was not the perfect child.
Behaviors increased as I aged, thoughts became more ingrained. I became more confused. I wondered what was wrong with me. Does everyone walk around their house and look in each corner before bed, to ensure their family’s safety?
Doctor’s appointments became modern-day torture for me, swimming in a public pool was the equivalent of dipping my hand in feces. School became difficult I was not able to write a full sentence without re-writing; I did not read a book or text-book due to pinging in my brain that I did it wrong.
Each year I would pray the next one I will be better. Living this very private hell, that some noticed and called me “quirky,” was exhausting.
My OCD in College and Beyond
By 1997, we ended our summer with a vacation, and I counted the minutes until I could be home in my safe space. Two days later I was off to college. Within a week I was packing my garbage bags and moving off-campus. Communal living was not my jam. Much to my surprise, neither was living in an apartment. Each way I turned I was followed by the pinging of anxious thoughts, telling me to complete different behaviors to feel better.
With the support of friends, I found a psychologist and had answers to my “quirks.” I had OCD, classic as she called me. There was nothing classic about my OCD, it was OCD and it sucked. I was prescribed some cocktail of medications that I later found out did not target OCD symptoms. I can remember driving back to my apartment with hope, each week I went to therapy and talked and talked. OCD just took over more and more of my life. I decided to take a break from that therapist.
I had no idea of the curves and bumps I would encounter after my break from therapy. OCD was still fairly unknown in the rural area where I lived, and to the general public, the stigma was massive. My sorority even gave me the award for most “craziest,” due to my OCD. I cried for days. I did not want to be deemed crazy.
Later in my career, my co-workers would target me with things that were contaminated just to tease me. Society had no clue the torture I was enduring, only my parents had a clue.
My family became very educated in OCD and they did all they could to help me on the journey. The rituals and obsessions morphed steadily, ultimately sending me on a long excursion that put my schooling on hold for a year or two. In addition, I have lost jobs, almost lost my career, had friendships destroyed and fun ripped out of my grips for some time.
Balancing My OCD
In the last 20 years, I have had five residential stays and several inpatient hospitalizations, and hours of exposure and response prevention. Several therapists, psychiatrists, and medications, OCD is the reason I was on disability and receive Medicare at the young age of 25.
Several doctors have called me treatment-refractory, or maybe try brain surgery, these comments only solidified my fears I have a beast that cannot be tamed.
Now at 40 years old, I continue to look for solace or a break from my thoughts and tedious rituals. I was faced with my biggest fear this fall and I did not break only bent. I lost my mom. Throughout the last week of my mom’s life, she told me many times “you have to be okay,” and to ease her mind. My response fighting through the tears was “I will be, Mom.”
In so many eyes I look okay, I go to work, I have a booming therapy practice, I eat, I golf, I take my dog on walks, I live on my own-but inside I am not “okay” daily I am balancing OCD thoughts and normal thoughts. No one sees what happens behind closed doors, which is chaos at my house and in my brain. I want my “okay,” to be without chaos, the dream that my mother had wished for me.
OCD affects 1 in 100 people. Though there are medications to help treat OCD, many OCD patients, perhaps as many as 40-60%, do not respond to the current medication options At Biohaven, our mission is to pave the way for new resources and studies so individuals with OCD have more effective treatment options.
We are currently conducting a research study evaluating an investigational medication to potentially treat OCD, with research sites across the country. Learn more about the OCD study and see if you qualify.