In 2007, while teaching at George Johnson's Science Writing Workshop in Santa Fe, I met a talented young writer named Jessica Reed. We've stayed in touch over the years and corresponded on many topics, especially on mental health issues. After my recent rant "Crisis in Psychiatry!," which riffs on the latest debate over the Diagnostic and Statistical Manual of Mental Disorders, Jessica responded with her usual thoughtfulness. I asked her to elaborate for readers of this blog, and she sent me the comments below. –John Horgan
I owe my life to the mental health system, yet as a student of science, I have always been deeply ambivalent about the state of psychiatry. Through years of alternating conviction and doubt, of romanticizing, of stigmatizing and de-stigmatizing, I have been sure of this much: in a less enlightened time, I certainly would have been in worse shape. In the animated series Dr. Katz, comedian Emo Phillips says, “I don’t know if I believe in psychiatry... around 1820 if you were having mental problems they would manacle you inside a well and pour ice-cold water on you until you almost drowned. It’s too bad they didn’t have TV commercials back then, ‘cause, you know: Ask your doctor if being manacled to the inside of a well and almost drowned is right for you.”
While I’m grateful that no one has manacled me to the inside of a well, my psychiatrist and I remind each other regularly: the science of treating mental illness is still in its dark ages. Therapy is often ineffective. Medication is rudimentary. Our Bible—the Diagnostic and Statistical Manual of Mental Disorders, or DSM—is a joke. This is what I say regularly, anyway, so I was surprised to feel flushed with panic when I read that the head of the National Institute of Mental Health, Thomas Insel, is moving NIMH research “away from DSM categories.” This is more than just a decision about where to place research dollars. Fundamentally, the NIMH is reconsidering everything. That’s how it feels, anyway. It feels like what little I had to cling to has been ripped away from me. It feels like being abandoned.
I wish I could speak better of our time. Our therapy is all over the place. There are competing schools of thought, ranging from Freudian psychoanalysis to cognitive behavioral therapy. To complicate matters further, there are as many therapeutic personas out there as personalities, so even if you were to choose in advance a school of thought you deemed reasonable or promising, you never know what your therapist will be like.
Our drug treatments are crude. We stumble together, doctor and patient (that’s if you’re lucky enough to be working together), searching for a tolerable combination of meds: one to mitigate each specific core problem and one each to fix the side-effects of the first. Despite advances in neuropharmacology—we know the names of several key neurotransmitters, have an inkling of what they do normally, and we know the mechanisms by which some of these drugs act—we haven’t the foggiest notion why some drugs work for some people and not others. We don’t know why some drugs work for a while in one person and then quit working. We really don’t know why drugs designated for one purpose seem to be effective in completely different arenas—for example, it is historical accident buffered by only a primitive notion of mechanism that anticonvulsants double as mood stabilizers.
The one standard psychiatry had was the DSM. It’s where we stored our collective, agreed-upon (by a few select committee members) definitions and categories of mental illness. “How many weeks have you been unmotivated? More than two? Then you are clearly clinically depressed.” In the past several decades, we’ve seen the politics of homosexuality, transsexuality, and gender identity evolve in this manual. We’ve seen lumpers and splitters get their hands on the definitions. My affliction, manic-depression, comes in many flavors: Cyclothymia, Bipolar I and II, with further codes about the relative severity of the diagnosis. Usually, my doctor officially codes me 296.80, Bipolar Disorder Not Otherwise Specified. I’ve always said that I refuse to become defined by the label. And yet… sign insurance forms with it for over a decade and see how cozy 296.80 starts to feel.
Insel says patients with mental disorders “deserve better” (than the DSM), and I believe his plan to replace it with the new Research Domain Criteria (RDoC) is well-intentioned. RDoC focuses on genetic markers and hard neural and cognitive data. That sounds great. What worries me is that the paucity of such data leaves people like me—at least temporarily—out in the cold. When I was groping for answers in high school and college, I was disappointed every time my thyroid test results came back normal (abnormalities could have confirmed hypo- or hyperthyroidism). In high school they tested my blood hormone levels and found nothing. Each time the hard data came back free of anomalies, I felt more lost. Something was causing my symptoms, and they were not all even arguably “subjective”: surges of sleep deprivation and weight loss cycled with the reverse. There was no question there was a biological basis for my problems, and when doctors shrugged, I wanted to cry. (It was disturbingly easy, on the other hand, a few years later to rattle off a list of symptoms that aligned with the DSM and have doctors hand me the Bipolar diagnosis within twenty minutes.)
I’ve lamented the lack of a test for Bipolar disorder for sixteen years. I should feel relieved about the NIMH announcement, but I'm uneasy about what comes next. When will there be a test? Suppose there is a test, and I fail? How would that explain my life? For over five years, I questioned and resisted my diagnosis. It was three years before I consented to medication. It has taken me a long time to come to terms with it, but I finally have, and like it or not, it is part of my identity.
The whole field of psychiatry is stepping back to regroup. This is what I wanted. So why do I feel more scared than I did a week ago? I’m happy if we admit that our approach thus far has been confused, misguided, ill-advised, sometimes profit-driven, and reckless, but until a wholly changed psychiatry emerges from the RDoC approach, please, please, please let’s not stop trying to figure it out. –Jessica Reed
Photo: Jessica Reed, George Johnson (right) and John Horgan, Santa Fe, 2007.
Postscript from John Horgan: Ms. Reed is my guest here on this blog, so if you respond to her essay, please be respectful. I will delete rude and abusive comments.
Postscript from Jessica Reed: This was a personal, reflective piece. I was not speaking for anyone but myself. I certainly was not speaking for those who have experienced psychiatry by force. While my experience has not been entirely positive—I would need a book to cover the gamut of experiences I’ve had—on the whole it has been more helpful than harmful. I am fortunate to have a doctor who respects my decisions and whose expertise I respect. We consider ourselves a team, and he has never asked me to do anything I wasn’t comfortable with. Probably more importantly, I am fortunate to have a supportive network of family and friends. Since we have found a framework to explain a lifetime of symptoms (the DSM “construct” called bipolar disorder), my family and friends have been better able to help me cope with a host of problems. If NIMH research is successful, this construct might one day be replaced by another explanation or set of explanations that are more physiologically based. I would welcome that. My point in this piece is simply that change can be painful.