I remember the pain in my left side like it was yesterday. My stomach was always hurting and appeared pushed out like it was full. The bouts of nausea, diarrhea and vomiting came regularly. My body was telling me something, but I was too young to imagine there could be anything seriously wrong with me.
I was missing school much too often, but I guess at age 5 it wouldn’t affect my chances to go to a good college. There were much more pressing issues, such as getting diagnosed correctly and having some certainty as to what was going on inside of me.
The stomach ailments seemed to go on for what felt like an eternity. It was actually about one year before the doctors in the hospital got it right. They initially told my parents it was probably stomach or kidney cancer since I was losing weight, having tremendous abdominal pains and no appetite. It took a brilliant British M.D. named Dr. McLaren to get it right. I had a severe blockage in my left kidney that was causing all of this physical and emotional pain.
When you are 5 going on 6, there is something unnatural about being in the hospital with children in the cancer ward for several months. It leaves you with a lot of time to see things you should never have to see and feel things you should never have to feel. I went to three birthday parties while I was there, and all three of those children had died before I left the hospital. I learned later they had leukemia.
Was I going to be next? I constantly worried that I would have a very short life, and that maybe when my birthday came it would be my last. I was so scared inside because I could see the fear in my parents’ eyes. I always tried to stay strong in front of my parents as I never wanted them to see me cry. I thought boys weren’t supposed to cry when we are in physical pain. “Just bite your lip and try not to talk,” I would tell myself. I knew that if I opened my mouth I would lose control.
Finally with a correct diagnosis of a certain type of congenital kidney dysfunction there was now a solution: surgery. I remember going into the operating room and being told to count backwards from 10. Then I woke up under a ceiling of bright lights. “Was I still alive, am I in heaven?” When the pain kicked in I knew I had made it. My left side was on fire, and I started to finally cry.
Post-op, I was wheeled back into my room with a strange sensation on the left side of my back. I reached back and felt a rubber tube coming out of a hole directly from my kidney. This was how I would urinate, according to the doctor. It was only temporary but was necessary to prevent any complications with my newly functioning kidney.
When was this nightmare going to end? Why was I going through this at age 6? I wonder what my friends are doing today. These were some of the thoughts I regularly had while at Children’s Hospital in Los Angeles.
The day had finally come for me to leave the hospital. No more IVs in my hand, no more daily blood draws, no more seeing children with no hair, no more wheelchairs, no more green Jell-O, and no more being the sick kid in my class. I imagined my life would get to start over. I would be happy from now on, and I would never worry about anything ever again.
I didn’t know yet, but the time I spent in the hospital had set the stage for a life of fear, anxiety, constant health obsessions and, ultimately, obsessive-compulsive disorder with severe hypochondriasis that would dominate my days and nights until I was in my late 20s. It was a journey that I would not wish on anyone.
It is my hope that my early experiences, my suffering with OCD, my treatment, and ultimately my story and the work that I do every day will save others from the misery and mental turmoil that is obsessive-compulsive disorder.
— Jonathan Lukas MFT is a psychotherapist specializing in cognitive behavioral therapy. He is in private practice and runs The OCD Treatment Center of Santa Barbara, working with adolescents and adults with anxiety disorders. Click here for more information or call 805.453.2347.