- Date posted
- 12w
I was first diagnosed with OCD at the age 19, the same time I first entered treatment for substance abuse. At that time, practitioners were focused on treating my SUD; it would be another 14 years until my parents and I, with the help of Dr. Whelan (UCLA, PANS/PANDAS Specialist), discovered that my OCD is (at least in part) the result of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection (PANDAS), a condition that went untreated since the onset of OCD-like tics that I had developed after repeated strep infections ages 6-8. Throughout my 20s, I struggled with constant feelings of inadequacy and shame, and would often turn to substances to manage the anxiety and hopelessness that lay in the wake of unmet expectations of perfection. My symptoms would fluctuate greatly as I got older, but about 3 years ago, my OCD took a dramatic turn for the worse. I was living with my boyfriend (now good friend), who helped me the best he could as he watched me decline mentally and deteriorate physically. I would spend 8 hours rearranging a bookshelf, or begin wiping off the bathroom counter, only to realize 4 hours later that I was still cleaning and had moved to the kitchen. There is a palpable sensation in my body when recalling the moments during compulsions where I was so unconscionably angry, exasperated and physically exhausted and starving, but I couldn’t stop. “I’m almost done!” I would cry out to my boyfriend, who knew that meant anywhere from 30 more minutes of cleaning to 4 hours, moving room to room as I discovered more “dirt.” My ocd had become completely debilitating. I couldn’t cook due to fear of contamination, I struggled to sleep, I NEVER arrived on time to anything, and I was at constant ends with myself. Finally, about 4 months ago, my therapist, boyfriend, parents and I made the decision that I should move home. I had been seeing a complex disease specialist who discovered reactivated CMV, requiring me to be on aggressive antivirals, and exposure to toxic mold, necessitating a long detox protocol. Within 3 days of finally agreeing to start the antivirals, I went from physically ill to waking up and suddenly realizing I was habing a clear thought. My mom noticed that I hadn’t hesitated or gotten side tracked, and arrived promptly - within minutes - following my typical “I’ll be right there” (aka in 2 hours) response. I hadn’t even noticed it, but ever since that day, I have been noticing small improvements; even my tolerance or threshold for discomfort has increased. A week ago I told my parents it was the first time since high school that I was able to execute a task from beginning to end, without distraction and with a relatively clear mind. I say this because I want others to know that no matter how hard things get, don’t ever give up hope. There is a light at the end of the tunnel, but in the words of Winston Churchill, “if you’re going through hell, keep going.” I believe having OCD has also made me incredibly resilient. I feel a sense of responsibility to share my story in hopes that it might help someone suffering from OCD, or a family member struggling to understand a loved one with OCD. NOCD is a great resource for those with OCD, as well as family members and loved ones struggling to accommodate or understand. My parents are currently going through SPACE, a program for family members to help them better understand how to navigate and gradually reduced accommodations that may have been a point of contention. I have seen huge growth and my parents in it has been beneficial in helping us set goals and objectives, as well as having an open conversation about what I’m going through and what they are going through. Thank you to NOCD for all of the education and support you provide the community for free!
