As you'll remember from my earlier post, the purpose of my trip to Berkeley and to Davis, California, was to support my son who was viewing college campuses. (In a few days, I'll begin a series on "triggering events," which will provide a different look at all this.)
Although my husband, son, and I had a wonderful four-day trip, and that is truly something to be grateful for, I was concerned about my ability to express true happiness. About a year ago, I realized that even when I was happy, I felt a certain level of sadness. It's difficult to explain but the underlying problems were anger, grief, and loss.
During the years of my medication merry-go-round,when I was taking so many drugs that didn't work, caused such horrific side effects, and made me sick almost every day, I never "blamed anyone" because I accepted my doctors' explanation that I was medication resistant and thus one of the most difficult cases to treat.
In 2003, I learned that all of this was a lie. The real problem was that bipolar depression had been largely ignored. Psychiatrists were prescribing medications for which few studies had been conducted. In fact, the first full scale clinical study of the efficacy of medication, the Systematic Treatment Enhancement Program for Bipolar Disorder, STEP-BD, didn't begin until 1998 and concluded in 2005.
What that meant to me was that from 1993 to 2003, I'd been taking medication that had barely been tested. This was confirmed by the American Psychiatric Association 2003 Practice Guideline for the Treatment of Patients with Bipolar Disorder," in the section on "Somatic Treatments of Acute Depressive Episodes." (Although I can't find the report online any more, I will write about its findings tomorrow.)
Once I realized that I had been a guinea pig for a decade, I felt I'd been sucker-punched. I realized that I was sick because I never had a chance to be well. I was taking medication that no one had tested because they'd been concentrating on the manic side of this illness rather than the depressive side. Somehow, they "didn't realize" that most of the suicides occur during depression rather than mania, that more people relapse into depression than into mania, and that depression is responsible for a higher level of disability.
How could I have spent ten years researching this illness without understanding how little was being done by the psychiatric profession? I wondered.
I wished I'd never begun taking medication and that I hadn't bought into the whole story that "responsible people need to be compliant." And I was outraged at the psychiatric establishment in the United States for pretending they knew what they were doing when they clearly didn't.
While my illness had saddened me, this information enraged me. I felt such an overwhelming sense of loss and grief that I didn't know what to do with my feelings. I wanted someone to care that my treatment for bipolar depression was worse than the illness itself. I wanted them to publicly admit they were prescribing drugs without any idea of their short-term or long-term effect. I wanted them to apologize to my son.
It was bad enough that I had been sick, but none of us are sick in a vacuum. This illness has had a huge impact on my son. It wasn't diagnosed until after he was born. I began taking medication when he was four years old and continued until he was fourteen.
Over the years, I can't even begin to tell you how guilty I've felt about its impact on him. The day-to-day stuff was bad enough, even though I tried--with all my strength--to mitigate it. Yet, each time we had to cancel a family vacation, or change plans, or send him to an extra session of computer camp (because I used to feel terrible during August), I was devastated.
In 2003, once I began seeing a doctor of integrative medicine and started feeling better again--for much longer periods of time--a part of me couldn't seem to resolve my feelings of loss. Now that I believed that there had been no real reason for all my suffering, my grief was overwhelming. Writing about it wasn't enough. I felt like I wanted to go to the Wailing Wall in Israel, pound my chest, and cry aloud--preferably for months. I wanted to hike up to the Hollywood sign (I live in Los Angeles) and shout, "The treatment for bipolar depression is worse than the illness." (Yes, I realize that would have been "mentally ill" behavior.) I wanted to write a letter of condemnation to someone in Washington D.C. but I didn't know who to write to.
Finally, a few months ago, I decided I had to let go of my anger. At best, it was non-productive. At worst, it made me sick. I realized that I've got six months left until my son leaves for college. While there is no way to make up for what he's lost, there is no value in continuing to dwell on "loss and grief" rather than happiness and joy.
[to be continued]