At 17, I went to a couple sessions of family therapy with my parents and six siblings. We were having low-grade family drama and my mom thought it might help. I can’t say it helped me, but we all went out for pizza afterward, and that left a nice memory. It also must have made the idea of getting help less intimidating, because I would end up doing that again and again in later years.
I’ll try to fly through this: At 26, I saw someone in a counseling center for a couple of months during a rough spot at the end of a relationship. At 32, a series of family practice doctors put me on Zoloft for a couple of years when anxiety and loss led to a bout of depression. At 35, I saw a clinical psychologist for a few months because of some small-bore emotional distress, and lucky for me it never came back. At 40, I went through a short course of cognitive behavioral therapy with a master’s-level therapist after a ferocious return of anxiety. It turns out I was a good candidate for CBT. It’s been 10 years and I haven’t had a day of worry since. I almost miss it.
Sorry to dump all this on you. I realize it’s probably not that interesting and that for people suffering more serious forms of mental illness, or their families, my bouts with mood must seem minor. But technically, I had been diagnosed at different points with generalized anxiety disorder, major depressive disorder and probably an adjustment disorder of some sort, and all of them could have worsened.
According to a widely used, if subjective, figure — it depends upon how much stock you place in the ever-expanding boundaries of the American Psychiatric Association’s Diagnostic and Statistical Manual — all this makes me part of the one in four Americans who experience diagnosable mental illness in a given year.
But the fact that I don’t envision negative repercussions from putting my mental health history in the Sunday paper suggests that either I have really bad judgment or that the stigma surrounding mental illness is lessening. I think it’s the latter. These are confessional times. Psychotropic drugs are the third most commonly prescribed pills in the country (329 million prescriptions written in 2012), with antidepressants the No. 1 drug used by Americans ages 18 to 44.
Clearly, getting help is no longer the scandal it once was. This is great news. When it comes to mental illness, any stigma or delay in getting care is too much.
And that is surely the motivation behind “Make It OK,” the $1 million public health campaign underway in Minnesota and sponsored by the National Alliance on Mental Illness (NAMI), HealthPartners, Twin Cities Public Television, and a half-dozen providers of mental health services.
Ads featuring oversized and empty conversation bubbles encourage people to talk about their struggles as they might a bout of the flu. I think that would be great. I hate silences surrounding mental health — not to mention unsolicited advice, sermonizing, nervous laughter, withdrawal and all of the other things we do out of skittishness.
The problem is, it’s actually not “OK” to talk about mental health, once we get beyond the point of asking everyone to start talking about mental health. For a host of reasons, the message of our anti-stigma efforts seems to begin and end at “getting help is OK.”
Can we talk for just a minute about moving forward? The advocacy movement, for instance, has yet to ask what safe and ethical mental health care should look like. If it did, it would not remain oblivious to the glaring stories relating to mental health and the drug industry now in the news.
The movement has shown remarkable disinterest, for example, in why the people who make its most popular treatments are now paying billions in fines to the federal government. It could ask us to start talking about that. It could ask why the bulk of prescriptions written for mental illness medications are written “off-label” — that is, the drugs are used to treat conditions and populations for which they are not proven to be safe or effective in the eyes of the U.S. Food and Drug Administration.
It could ask why most psychiatric patients take two medications and a third of them take three, when the research on drug-to-drug interactions is so poor.
I’d like to see those topics fill up some of the empty conversation bubbles being comically depicted across town. Because, as it now stands, those with mental illness are paying for our silence.
And if the conversation remains stuck at Make It OK, I have an idea why that is. The anti-stigma movement has married itself — for now, though it eventually will have to change its tune, simply because psychiatry will have moved on as well — to a drug-industry script that mental illnesses are diseases like any other.
“A mental illness can be caused by chemical imbalance,” reads the Make It OK facts page. You can find similar language on Web pages hosted by the state of Minnesota and at the start of NAMI’s strategic plan. The idea has infiltrated the culture. The reasoning for this biocentric view of mental illness is clear. Society does not stigmatize people with arthritis, the thinking goes, so depicting mental illness as biological should reduce stigma.
The problem is, it’s not true. As Dr. Wayne Goodman, former chairman of the FDA’s Psychopharmacology Advisory Committee, said in 2007, the notion of a serotonin deficiency in depression was “a useful metaphor” in explaining the condition, albeit one he did not use with his own patients.
“It’s kind of a bumper-sticker phrase that saves time,” was how Dr. Ronald Pies, Tufts University professor of psychiatry, criticized it in 2011, saying it “allows the physician to write out that prescription while feeling that the patient has been ‘educated.’ ”
Likewise, it’s been clear for decades that there is no oversupply of dopamine in the brains of people suffering from schizophrenia. By 1990, even Pierre Deniker, the researcher who discovered Thorazine, was unequivocal that “the dopaminergic theory of schizophrenia retains little credibility for psychiatrists.”
Needless to say, there is no deficit of serotonin or oversupply of dopamine at work in bipolar disorder, though critics have argued that the spike in the illness may be related to the rising use of psychotropic medications. That’s because, far from correcting imbalances, psychiatric drugs cause a person’s brain to function in a manner “quantitatively and qualitatively different from the normal state” according to Steven Hyman, former chief of the National Institute of Mental Health. The brain becomes abnormal after taking them — receptors decline or increase in number in response to the pills.
So where does our modern “chemical imbalance” language come from? From admen for antidepressant and antipsychotic drug manufacturers. “Chemical Imbalance” is like “I’m Lovin’ It.” It’s marketing.
Where’s the harm? For one thing, patients can’t consent to treatment if they are misled as to its nature. But civil liberties aside, telling people they have a biological illness of the brain is actually counterproductive to reducing stigma. “Biomedical causal explanations are related to increased acceptance of medical treatment,” says Brett Deacon, a clinical psychologist at the University of Wyoming and author of a recent paper on the subject. “But they do not alleviate, and in some ways may exacerbate, concerns in the lay public about dangerousness, unpredictability and desire for social distance from people with mental illness.”
Deacon says a biological explanation for mental illness makes patients more willing to take pills, but more pessimistic that they could ever recover, not to mention find the skills they need to get better or do so through talk therapy. This is troubling when you consider that 75 percent of patients with anxiety and depression said they would prefer to receive talk therapy over medications, according to a 34-study, 90,000-patient Harvard Medical School review published last June in the Journal of Clinical Psychiatry.
The lack of a biological cause behind mental illnesses does not make them any less valid, urgent, worthy of our compassion or legitimate as objects of insurance-paid treatment. Nor should it give rise to defensiveness on the part of families, patients or the advocacy community. Accepting that mental illness is likely a function of genetic vulnerability combined with environmental stressors does not even invalidate the targeted use of psychiatric medications to alter states of mind, if not treat “disease.”
What it does do is expand the limits of what it means to advocate for the mentally ill.
Freed of these illusions, professional advocates for those with mental illness could better support families by pushing for open access to clinical trial data. Right now, American drugmakers are telling European courts that clinical trial observations about side effects of their drugs are trade secrets. If they prevail, these will become off-limits. Does anyone think that’s a good idea?
NAMI-Minnesota could offer its support for the step taken last week by the University of Minnesota. President Eric Kaler heeded the faculty Senate’s recent vote and finally agreed that an outside panel should investigate the U’s clinical trial procedures and presumably the death of a patient named Dan Markingson in an ethically questionable psychiatry department drug trial that observers have deemed an “experimercial” — because it seemed designed to boost profits of a drugmaker, not advance science. In that sad affair, the university had for years dismissed the concerns of its own faculty and repeated the same unconvincing defenses.
We could start using websites like Rxisk.org, public databases where patients can report and learn about drug side effects in a forum not filtered by the FDA or its primary funding source, the drug industry. We could speak up for those who took part in clinical trials of new drugs believing they were helping their community, rather than supplying trade secrets for a global industry expected to make $1 trillion in 2014.
Today, the mental health community’s actions resemble those of mainstream breast cancer organizations, who “have tied themselves so closely to corporations that they have to sell this disease in a particular way,” according Samantha King, in the 2012 documentary “Pink Ribbons, Inc.” The sooner we let go of the notion that mental illnesses are biological, the sooner we can distinguish treatments that work from treatments that are just keeping us silent.
Paul John Scott is a health sciences writer living in Rochester. On Twitter: @PaulJohnScott.