Not crying wolf

Published March 01 2018

Have you ever felt sick enough that you thought you should see a doctor — made an appointment, took time off work, hired a babysitter, spent an hour thumbing through ancient magazines in the waiting room — only to be told (implicitly or explicitly) that you’re exaggerating, that it’s all in your mind? Or the result of your bad, sloppy living habits? Or not really a big deal and it will go away soon?

If you’re nodding along, chances are you’re female.

There’s plenty of evidence — enough that all those doctors should be pretty embarrassed by now — that women are at greater risk for certain conditions that cause pain ( migraines, for starters) and that they are treated less aggressively for pain than men.

For the medical profession, I’m sure it’s complicated. With insurance companies breathing down their necks, doctors feel pressure to move patients in and out quickly. Like the mechanic who can’t find the source of that funny noise your car makes, a doctor might get impatient with someone who doesn’t have a clear-cut, diagnosable and treatable problem. So they put it back on the patient or imply that if they can’t find it, it’s probably no big thing.

Part of this is undoubtedly plain old garden-variety sexism. We’ve made some progress in gender equity, but men’s bodies are still regarded as the norm in many aspects of life, including health. Much about women, including their pain, remains a side note. In addition, the diseases that are difficult or impossible to diagnose — those for which telltale markers have yet to be found — seem largely to afflict women. Fibromyalgia, autoimmune disorders, polycystic ovary syndrome — and the subject of this month’s cover story: the almost unpronounceable myalgic encephalomyelitis.

As Lily Williams reminds us in her feature story, ME used to go by the less accurate “chronic fatigue syndrome.” For years, it has languished, with research that went nowhere and patients disrespected. It mostly strikes women (though plenty of children and some men get it), and it’s difficult to diagnose and almost impossible to treat. It’s finally getting a bit of attention from the National Institutes of Health, with $7 million in targeted funding for four research centers.

I first heard of chronic fatigue in an interview with the author Lauren Hillenbrand, who described researching and writing her bestseller “Seabiscuit” while lying flat on her back. That stuck in my mind because, although words are my job, even on my best day I have trouble stringing them together. And Hillenbrand is no outlier. A quick internet search shows that famous sufferers range from Florence Nightingale to musicians Randy Newman and Cher to U.S. soccer star Michelle Akers.

When I think of Lizzie Mooney, the 12-year-old Illinois girl in Williams’ story who has been terribly sick with ME for a quarter of her life, it makes me wish doctors were more willing to listen to and believe their patients — and to admit they still don’t have all the answers.

Comfort Dorn Comfort Dorn is the managing editor of ASBMB Today.