Patient versus Consumer

I have a chronic and debilitating medical illness that affects the largest and most metabolically active organ in the body. Left untreated, I have a one in five chance of my life coming to a precipitous end. The lifetime costs of my illness may be as high as $600,000, which includes lost employment. The medical complications of my illness affect every organ system in the body and will result in my dying seven years earlier than someone without my illness.

The World Health Organization ranks my illness as the sixth most disabling in the world. Depression is number two.

Don’t call me a consumer. That is a gross insult. I am a patient. The person who treats me has an MD. I will be taking medications the rest of my life.

A number of years ago it became politically correct for mental health groups and government agencies to start euphemistically referring to patients as “consumers.”

Consumers? Have you ever heard of an AIDS consumer? A heart consumer? A cancer consumer? Let’s analyze the term.

Consumer implies we have some kind of choice in the treatments and therapies we are consuming. What choice? There are no true bipolar drugs. One is a common salt whose clinical purpose was discovered serendipitously. The others were used first (again serendipitously) for other illnesses. Even when used to treat the illnesses for which these drugs were originally indicated, they leave a lot to be desired.

So a choice between good and bad drugs? Sorry, no choice. We’re stuck with the bad drugs. The good drugs are still on some chemist’s drawing board.

How about choosing psychiatrists? Sorry again. Mangled care chooses our psychiatrists, that is, if we’re lucky enough to find one – there happens to be an extreme shortage.. How about other treatments and therapies? Talking therapy? Seeing a nutritionist? Extended hospital care? Community services? Sorry yet again, we’re living in the era of drive-by psychiatry. A short course in talking therapy, if you’re lucky. Otherwise, out into the street, disoriented and confused, with a prescription. Anything extra is on a take-it-or-leave-it basis. If we’re lucky, the system may grant us a favor. Some choice.

Why are names so important? People who think mental illness is not real and who oppose all forms of psychiatry love the term consumer. These people have appropriated the word “survivor” for their own ends, and happily see themselves as part of the “consumer/survivor” movement. Believe me, they would brook no part of any “patient/survivor” movement.

The euphemism, consumer, after all strongly suggests that we are not real patients with a real medical illness. And guess what happens if people think you don’t have a real medical illness? Naturally, it’s all your fault. You’re the one who needs to snap out of it. You’re the one with an attitude problem. As Tom Cruise says, all you need to do is take vitamins.

But the implications are far more pernicious than that. Only true medical “illnesses” draw top research dollars. According to a 2003 report by the Treatment Advocacy Center and Public Citizen, the NIH in 1999 spent $2,240.88 per AIDS/HIV patient in researching AIDS/HIV and $476.26 per lung cancer patient in researching lung cancer. For schizophrenia, the per patient figure was $74.95, bipolar disorder $25.95, and depression $18.60.