Confessions of a ‘Provider’

I was recently ushered into retirement from a long career managing services for people labeled as psychiatrically disabled. In that career I started up a couple of clubhouse programs and oversaw day treatment programs, sheltered workshops, IPS employment services and PACT teams. I got involved with NAMI during its early days, supported family groups and started an early family support program. I served on the Massachusetts Transformation Committee for many years and helped bring peer support services to my agency. While I was old enough to retire, I still have to I blame Bob Whitaker for ruining my career and tainting my sunset years. Again and again, the first time when in my very prime, he managed to divert me from my comfortable career path, sending me careening down rocky tracks toward turbulent rivers of confusion and, ultimately, shame.

The first instance was caused by his Globe Spotlight series in 1999 detailing human subject research abuse in clinical trials of psychiatric medications and related research. That got me thinking about what a mess we were making of the issue of informed consent, and sent me on a mini-crusade to help expose the abuses which, after a few years, ran its course. After a few of peaceful and (I thought at the time) productivity years, I read Mad in America, in which he detailed the shaky foundation of the system in which I worked. Part of it confirmed what I knew from experience, but I was still able to fend off enough of it to carry on. I was, after all, a rehab and recovery guy, and I could push the point that medication wasn’t everything. Though no one was listening, it made me feel better.

Then I heard him speak at the Mass. Psychiatric Rehabilitation Association conference a few years ago, and heard his theory explaining away the research showing that people’s medications seemed to help them avoid re-hospitalization. It sounded plausible, but lots of our biggest mistakes in mental health have come when we confused plausible with proven, and of course, he wasn’t a neuroscientist. As one of those glib journalists who scratch the surface, he was provocative and raised excellent questions, but I was able to put it in perspective, thinking I was fighting the good fight. It wasn’t until a couple of years ago, when I read Anatomy of an Epidemic, which provides the source material for the theory he described in his talk, that I finally got it.

The detailed analysis of his research was impossible to dismiss. It forced me, at last, to confront the possibility that I had spent my entire working life complicit in a system that was actively making people worse. It convinced me that the smart thing for people to do was escape the system, to avoid people like me at all costs, and simply do the best they could on their own.

I didn’t accept the idea easily. I shot off messages to all my friends in the business, everyone I could think of, psychiatrists, psych. rehab folks of every stripe, researchers, advocates… Could anyone refute this guy’s analysis? Eventually, many got back to me, though a few of the ones I most wanted to hear from did not. Some advised me to ignore the work, but no one provided any specific refutation. No one attacked his analysis directly. He may have been a journalist but he was citing researchers publishing in established journals.

It was not infrequent, over my more than forty-five years of work in mental health support settings, for people to say to me that the medications were making them worse. I was always open to the idea that medications were ineffective for a given individual, and often railed against the fact that people who admittedly were not being helped by their medications were none-the-less left on them at high doses, but I never took seriously the idea that the medications were causing the problems they were purported to treat. Reading Anatomy, I thought of those times when I turned a deaf ear to such concerns when they were raised by the people I was supposed to be helping.

It’s not enough to look back on all the arguments I had along the way, when I was one of a very few voices insisting that medications weren’t the answer to everything, that when they weren’t working, we should change course, and that people always seemed to be on way too many of them for way too long. When I yelled about everyone seeming to get diabetes—type 1, not the one you get from poor diet and lack of exercise—it still wasn’t enough. [It’s particularly irksome that people continue to focus on diet and exercise as if it will answer the problem created by the medications.] I had consented to be part of a system that always took what I had to offer as an add-on to the main intervention: medication. Everything was always built around the drugs. Forty-five years of that is not a pretty sight to look back on.

I still know plenty of people who depend on drugs in their recovery. And it’s not as if I have to recon with the damage to my own brain since I haven’t ever taken psychoactive medications, at least not those prescribed for psychiatric conditions, but it has changed the way I feel when I hear proposals for early screening for emotional issues and mental illnesses. I’m sure some people will receive extra emotional support and counseling that will be very helpful, but I’m afraid many more will be damaged by powerful, crude drugs at a time when their brains are especially vulnerable.

Better access to treatment? Well, that depends… Perhaps we need to start with better treatments that take into account early trauma and that minimize re-traumatization as a side effect. It’s time we at least looked to medications as a treatment of last resort. That would be a comfort to at least one recovering provider.