When Doctors Get It Wrong

The Beginning

It was a gloomy winter day as I sat in the back of the car while my father and mother drove me to another appointment in Pittsburgh. It was and wasn’t like so many car trips of my childhood for so many doctors’ appointments. The same deadening silence filled the car as we drew closer to our destination. My parents never discussed the appointments with me and I just learned to never ask. This appointment was different though; it came about as a result of request by a psychology professor who was conducting a follow–up study on individuals treated by the team of endocrinologists I saw as a child.

The professor had reached out to me through my parents, since that was the only contact information available. It had been more than ten years since I had seen any of the doctors who treated me as a child. I was living in another state when I received the call from my mother informing me of the request for my participation in the study. I was really quite shocked; in all the years I was treated in early childhood and adolescence, no one had ever asked me how I felt about the treatment I received. I knew I had a medical condition, but no one ever explained to me why I needed so many appointments, and why I had to take medicine three times a day. No one told me why, when I was two or three years old, I had surgery that left me with memories of gauze and a catheter between my legs, or why medical residents still wanted to examine me, or why I had to be humiliated and ashamed, again and again. I was in my early 30’s by this time. Surely if my condition was so important that someone wanted to talk to me now, so many years later, the conversation would have already happened?!

My parents dropped me off at the scheduled location for the interview. The professor introduced himself and his colleague. I didn’t recognize them, which meant they weren’t the doctors who had treated me. I remember feeling somewhat relieved, as I never liked the doctors who treated me as a child. I remembered my last appointment there, and feeling that I was escaping from captivity, that I was free to go on with my life.

I wasn’t sure what to expect from this meeting. The professor told me that to date no one had completed any follow–up on the pediatric patients treated by the hospital’s endocrinology team to see how they were faring in life. He said he thought that was quite odd, so had decided to take on the project himself. He began by asking, “so, D_____, [I went by another name then] how are you doing at this point in your life?”

I felt a sudden surge of rage, and, to my own surprise, I found myself responding angrily, “Why the hell do you care? It’s been over ten years and nobody, I mean nobody gives a rat’s ass as to how I’m doing and coping with the ramifications of the treatment I received from Dr. X.” Looking back, more than ten years after this meeting, I can see that I had been angry for a long time. I had been compliant and knew to play my role as a good girl. I had a good job, and I was married, but I knew I was far from happy.

And so with that first question began what would be the long painful journey to discovering what had been hidden from me for over half my life, the source of my confusion and unparalleled frustration. What I had experienced throughout my childhood would permeate every aspect of my being and perception of myself for years to come. Every day I had to confront the effects of that experience just to live another day.

The Middle

I was in shock and disbelief as I read and reread the letter my attorney presented to me from the very group of...