Updated: Nov 4, 2021
Posted to Emily Wilkes Website
My Diagnosis Story
By Sheila Henson 8/29/21
“You have Obsessive Compulsive Disorder -- OCD.”
Relief spread through my body at hearing those words. I had a diagnosis. An explanation. A reason why I just couldn’t seem to keep my life together no matter how hard I tried. I was so happy to finally have a diagnosis that I cried. Unfortunately, it was the wrong one.
I was 20 years old, and in some ways so confident. I had an amazing group of close friends, and was always jumping from one creative project to the next. I was great at my job doing behavioral respite, helping neurodivergent kids and their families. I was enjoying going to community college and pursuing a degree in psychology. But I always felt I was never quite keeping up.
I would forget about assignments constantly, and when I did remember them I could never get started until the last minute. Some days I couldn’t make myself go to class, even the ones I really liked, and I didn’t know why. At work I would show up late and forget to turn in my time sheets to get paid. At home I could not keep my spaces clean, and it caused tension with my parents, who were baffled by my inability to just act like an adult. I was just as baffled. I always said it was “anxiety,” but that term never quite fit. It felt like there was a wall that just wouldn’t let me do things like I should.
I was hopeful that my OCD diagnosis would turn it all around. I was prescribed Prozac and worked with my therapist twice a week. I started going to the gym regularly and paying more attention to my nutrition. Things were looking up at first, but it didn’t last. After a few months the Prozac started to make me feel numb. I couldn’t cry, and I wasn’t getting excited about creative projects like I used to. I also developed really awful acid reflux that made me vomit up the bright blue pill. I went off the Prozac, and fell back into my old ways. It took me over 7 years to get my associates degree, and I was 25 when I finally transferred to Chico State.
During that time I also met a few people who actually had OCD, and it became clear I had been misdiagnosed. I was also diagnosed with Generalized Anxiety Disorder and Depression, but those also proved to be devastatingly unhelpful. I was back to feeling broken and inherently flawed. I self medicated with an excessive amount of coffee and junk food and a long and painful codependent relationship.
The bright side of all of this was that in my continuation of working with neurodivergent clients and my studies in psychology and human behavior, I was slowly learning how to work with my brain instead of fighting against it. Having a job where I was helping families problem solve behaviors in a gentle and empathetic way taught me to start doing that for myself. As I saw each one of my clients as worthy and wonderful despite their struggles, I started to be proud of my “quirkiness.” I didn’t know why I was struggling, but I started to believe it was okay to ask for help, and on some occasions, to even say “no.”
With my growing self acceptance and repertoire of coping skills I managed to graduate with a master’s degree in education on my 30th birthday. I quickly got a job teaching in a self-contained behavior classroom at a non-profit private school. It was such an incredible job, and the more I got to know my students, the more I became hyper-focused on finding ways to support them. I would come home and spend hours on the internet learning about their various diagnoses. Unsurprisingly, many of them had Attention Deficit Hyperactivity Disorder (ADHD).
I had certainly thought at times that I might have ADHD. I knew I was “scatterbrained” and prone to zoning out. One of my therapists had mentioned it at one point, but I dismissed it. Many of my family members were diagnosed, including my sister. They all seemed to struggle in school and with what was deemed “bad behavior.” I always enjoyed school (aside from homework), and was never disruptive. If I had ADHD, it must be a “mild case,” I thought. As I learned more about ADHD, however, it all felt more and more eerily familiar.
In 2017, something bizarre happened. I joined the site 23andMe to do research into my ancestry, and I received a message. “Hi, I’m Danielle. I have a twin sister named Kirsten, and I think we have the same sperm donor.” Sure enough, the website had matched our DNA, and we were half-sisters. I knew that my dad had donated sperm back when he and my mom visited a fertility doctor before I was conceived, but I never thought I would actually meet any half-siblings!
We met, and became fast friends. We all had so much in common. Both Kirsten and Danielle were diagnosed with ADHD, and the more I got to know them, the more I felt that eerie familiarity. Danielle had coordinated a clinical research study on people with ADHD, and she was a wealth of knowledge about the disorder. “I think you definitely have ADHD,” she told me. “Ya, probably,” I replied, shrugging it off at first. But the more she talked about her experiences, the more I related, and the harder it was to ignore. Many of the traits I had thought of as Henson Family Traits were actually symptoms of ADHD. I brought it up to my therapist, who confirmed that I should get assessed.
By the time I got my formal ADHD (Combination Type) diagnosis, I was already an expert on the subject. I had hyper-fixated on learning everything I could, and spent every moment of my free time connecting the dots of everything I knew about neurodivergence and mental health. All of my schooling, all of my jobs, all of my experiences with friends and family and myself came together to form a cohesive picture. I felt like I understood myself fully for the first time in my life.
Now, as an ADHD coach, I hear similar stories every day. Granted, most of them don’t include long lost sisters discovered through sharing genetic data . . . but the feelings of confusion, desperation and despair are always present. Misdiagnosis is rampant, and misinformation is everywhere. It can be incredibly confusing and disheartening to navigate. Luckily, a lot of people are working hard to educate the masses about the truth of ADHD.
Especially fortunate is that ADHDers go hard when we care about something. The internet is now filled with passionate ADHDers, using their energy and hyperfocus to create safe communities and educational spaces. The pandemic has given many of us the time and space to explore and manifest, and we are taking full advantage.
I feel excited to be a part of this neurodiversity revolution, and to work toward a future where no one will have to struggle the way I did to get the support they need.