No Boundaries

After Ben was diagnosed with Schwartz-Jampel syndrome, my world began falling apart. I don’t think it was just because of the diagnosis, I think part of it was the uncertainty of what he and all of us would be facing. Up until May 2003, I had become as expert as possible on Marfan, Ehlers-Danlos, and Stickler syndromes, the three major diagnoses doctors had considered for Ben. SJS came out of the blue–and what was worse, very little was known about it. How was I going to become an expert?

In July 2003, as I was spiralling downward, I self-administered the Beck Depression Inventory, and was shocked that I scored in the severe range. I’ll never be able to fully describe the cloud, the fog, the fear, the anger, the despair that comprises depression. But I thought, “I have a PhD in psychology, I know what to do”. Of course I didn’t. I went to my primary care provider, who prescribed Lexapro–which had recently come on the market–but she knew of NO psychologists or clinical social workers to refer me to. My countless calls to unknown therapists resulted in zilch. I finally found a psychoanalyst through a friend, but after 6 months of seeing her, I realized I didn’t have 5 years to figure out a solution to my problem. The psychoanalyst had sent me to a psychiatrist to get my medication right, and it was this doctor, being one of the few psychiatrists who actually engage in cognitive-behavioral therapy ,who finally helped me reach recovery. And he helped wean me off Lexapro, which had stopped my rage, despair and anger, but had left me in a near-zombie like state.

I always felt the need to go public with my depression experiences–it was my own anti-stigma campaign. I chronicled some of my experiences in a commentary in the journal Pediatrics, I was a featured speaker at a Family Voices conference in South Carolina on this topic, and I’ve been a guest speaker in a BUSPH class on maternal and child health to talk about this as well.

But it was wonderful to experience someone else going public with their mental illness story last night. Sherin and I saw the play “Sick”, performed at BU by the Seattle-based monologuist, Elizabeth Kenny. Elizabeth, after developing depressive-like symptoms as a result of hormone medication for ovarian cysts, was sent to a psychiatrist, who first put her on Paxil, then Celexa, and finally Lexapro, while other physicians added Klonopin and then Zyprexia to the mix. The narrative is about her developing psychotic symptoms while she was taking both SSRIs and anti-psychotics, and how these meds ended up making her toxic and taking away 2 1/2 years of her life. The story is powerful, and will be very familiar to those who have tried to fix one health problem, yet the “fix” only creates other health problems. Elizabeth’s case was extreme, but as one physician from the crowd pointed out, she was never referred to an endocrinologist, which was what should have happened in the beginning.

I was once asked by a friend and colleague what it feels like to tell my story about depression. It’s definitely uncomfortable, but if I won’t do it, who will? Elizabeth Kenny will–kudos to Elizabeth for her commanding performance about the problems with U.S. mental health care. She began her public journey by speaking to psychiatrists at Cambridge Hospital about her experiences, and now she’s traveling across the country in her one-woman show. I won’t be joining her on stage, but I commend her spirit.