A delightful woman I’ve been corresponding with for many months now and who comments here and elsewhere with the handle “undiagnosed,” generously wrote a guest post for me. I was not expecting it right now and so my “hiatus” may seem brief, but I do intend to go underground again for some unspecified time. “Undiagnosed” shares here for the first time her story of entering the mental health system and then her journey out of it. Of great interest to me was her successful and arduous withdrawal from psychiatric drugs. She has served as one of my role models since I began this blog. I am very grateful to her for sharing her story and I know it will speak to many of you.
Here it is:
I withdrew from Zyprexa in the summer of 2003, inspired by a terrifying reading of Mad in America by Robert Whitaker. Though I hadn’t formed such a goal when I began, over the following three years I weaned gradually off of my three remaining medications (Klonopin, Tegretol, Lamictal). The last time I took a psychiatric drug was Nov. 22nd, 2006. I had medical supervision and full support from my wife during this withdrawal process, though I was prepared to go off my last remaining med “against medical advice” if necessary. I had been diagnosed with bipolar disorder in 1998, when I was twenty years old.
The process of withdrawing from these drugs was long and grueling. When I withdrew from Zyprexa I experienced tremors that made it difficult to work or even to hold a fork to eat. Fortunately, the tremors were not permanent and finally abated 6 months after my final dose. While withdrawing from Klonopin, after the slightest drop in dose I experienced weeks of headaches so profound I could work for only a few hours a day and could barely speak or do anything other than sleep in the evenings. Despite the difficulty, my wife and I both noticed that once each withdrawal period had passed, each time I dropped another drug from my regimen, I became healthier and more resilient. I wasn’t getting sicker. I was getting better.
During this time I got married, entered the tiring and wonderful world of parenthood, completed my Ph.D., and purchased a home. Withdrawal added significantly to this life stress, and still I was fine. I began to wonder what relevance my diagnosis had to my current life, and to have doubts about the circumstances of its application. Not long before I was diagnosed, I was bitterly rejected by my family due to my lesbianism and partially as a result, had dropped out of college (though I had no trouble holding a job). I am no longer convinced I ever truly met the criteria for diagnosis, though it is difficult to discern such a subjective “truth” from a decade away. It is certainly true that I was alone, angry and profoundly sad.
My choice to access psychiatric care, and it was my choice as I was never forced into care or hospitalized, served an important purpose. However, I no longer believe it served a medical purpose or that I was treated appropriately. Diagnosis led to some level of reconciliation with my family, which may have been my subconscious goal when I accessed care. It was much easier for us to relate when I was “sick” and they could take care of me. No caregiver at the HMO where I was treated made more than a cursory inquiry into my family situation. I was offered only drugs, and one short therapy visit per month, a 1 1/2 hour bus ride from my home, at which I was only pestered to take drugs. I’m not sure I would have listened had anyone tried to connect with me about my situation. I was fiercely protective of my family and preferred to be sick rather than to “blame” them. But it strikes me that no one treating a young lesbian who had just lost her only support system came even remotely close to putting two and two together. As a society, we no longer interpret homosexuality itself is a psychiatric illness. But if we attach permanent labels and dangerous medications to the very real social and emotional consequences of coming out, perhaps we haven’t made much progress.
While I do not claim that absolutely no good was served by my nearly 10 years of psychiatric care, I am certain that the net effect was negative. I lost many days of productivity to side effects and spent over three years in measured withdrawal that left me physically miserable for months at a time. The decreased white blood cell count caused by Tegretol still remains two years after my final dose. I am in the process of trying to purchase life insurance to protect my wife and child should I die. Initial research indicates that this will likely prove impossible, or at the very least, incredibly expensive. What feels the most damaging, though, is the loss of faith in myself. I have spent years doubting the faintest energetic feeling or edge of sadness, interpreting every slight turn of the mood as impending disaster. My diagnosis provided a framework in which all of my emotional experiences were pathologized, by doctors, by those around me, but most painfully, by myself. For almost a decade, I was never sad; I was depressed. I was never happy; I was manic. A good day was a day on which I felt nothing.
I do not know precisely the reasons that I am doing so well now, nor do I understand all of the reasons I seemed sick ten years ago. What does seem clear is that through some combination of increased support, decreased medication, a stable marriage, the power of seeing myself as healthy, and the process of growing up, my emotions and behaviors fall well within the range of “normal,” and have for many years. My parents and I have reconciled; they welcome my wife as their daughter-in-law and our daughter as their granddaughter, though it has been a long road for all of us. When I visited my psychiatrist after my final dose of meds, she said she didn’t need to see me again. She wasn’t worried. About a month ago, my therapist who I had been seeing only occasionally, pretty much told me I didn’t need her anymore.
I have spent some amount of time quite angry at myself for getting into this mess in the first place. If I had been forcibly hospitalized, I would have someone else to blame. But I walked into that clinic. I reached out for “care,” and always made sure to have a doctor, despite insurance problems, moves and job changes. I voluntarily swallowed those pills each and every day.
What finally prompted me to sit down and write this for Gianna, who has been generously encouraging me to share my story for some time now, was an experience last week. After a week or so of too little sleep and a too much travel, something set me off and I began to worry. A lot. My mind twisted around how a slight mistake regarding an insurance change was going to spell our financial ruin. Whenever I opened my mouth, out spilled more details about how this or that fit into our ultimate financial demise. After about an hour of this, my wife turned to me and said “I know you might not really hear this right now, but this isn’t a big deal. I’m not going to talk about it anymore. I’m going to bed.” I knew even at the time that she was right. I got up, paced the living room, cried and worried. After a little while I realized I wasn’t even worried about the money anymore. I just felt bad. Really really bad. My insides felt turned inside out. The pain came and went in waves. What struck me, even at the time, was how it felt so strange but familiar, how I hadn’t felt this way in so many years. I remembered that pain is OK, that these things pass, and that I’d probably be fine in the morning. Eventually I fell asleep. I was, indeed, perfectly fine in the morning (and went to bed on time the next night).
In the midst of my pain that night, I remember thinking “If this how I felt at twenty, then I understand why I asked for help.” At least for a moment, I was able to stop blaming myself for going to that clinic, for stepping onto the path that so damaged my body, mind and spirit. There was no way I could have possibly known where that road would lead. Yes, I believe my care was astoundingly and repeatedly mishandled. Yes, I wish I had wised up sooner. But that first step? As much as I hate to admit it, and as much as I wish I could undo the act, given the information I had at the time, I did the right thing when I walked in that door.