- Dec 2, 2016
- DX FIBRO
Short article in the NY Times that I thought was interesting. Due to my having copied and pasted the article (removing the links) it is formatted a bit strangely here. I always like to see this sort of article, which indicates that attitudes toward mysterious and invisible pain conditions are genuinely changing.
‘To give them hope’
The mysterious illnesses in the Murray family started with Polly, the mother. During her pregnancies, she suffered fevers, headaches, intense joint pain and a red streak across her face.
Doctors variously diagnosed her with scoliosis and more obscure conditions, and some told her that the problem was all inside her head. “Sometimes people subconsciously want to be sick,” one said. Eventually, similar symptoms afflicted her children and husband.
Millions of people have some idea of the frustrations that the Murrays endured. About one in five Americans suffers from chronic pain, often of undiagnosed origin. Many spend years searching for answers, and doctors — even if they’re more sensitive than some of the Murrays’ doctors — frequently fail to find any.
One of those sufferers has been my colleague Ross Douthat, a Times Opinion columnist. In 2015, Ross began to experience episodes of searing pain that at times left him unable to sleep or function. He has just published a bracingly honest memoir, "The Deep Places" about these experiences.
Today, Ross is confident that he is a long-term sufferer of Lyme disease, despite initial test results to the contrary. In that way, he has something in common with the Murrays. Their teenage son was one of the first people diagnosed with the disease after it was discovered in 1975. The disease is named for Lyme, Conn., the town where the family moved years earlier, around the time that Polly began suffering her mysterious symptoms.
The lessons from their experiences and Ross’s are relevant far beyond Lyme disease. Both point to problems in American medicine — for all its great achievements — that bedevil people with mysterious pain and illness.
A middle ground
American medicine often struggles with subtlety. It treats many conditions as binary: You have it, or you don’t. It fetishizes individual research studies and dismisses broader evidence or logic. (Remember when public health officials told us not to wear masks because no study yet showed them to be effective against Covid-19?)
This overly neat drawing of lines ends up serving many people poorly. It puts too much stock in a negative Lyme disease test, for example, and assumes that the disease’s symptoms cannot persist for years. It imagines that an illness is either real and can be addressed with a pill or treatment — or is strictly a psychological condition.
Reality is often messier. Scientists still do not understand many common health problems, including chronic pain, and many may remain mysterious for the remainder of our lives. In the meantime, what should a sufferer do?
Ross’s answer is to look for a middle ground between research science and more creative options, and to remember that modern medicine is both marvelous and still often wrong. He writes:
What we need, I’m convinced, are more people and institutions that sustain a position somewhere in between. We need a worldview that recognizes that our establishment fails in all kinds of ways, that there’s a wider range of experiences than what fits within the current academic-bureaucratic lines … and yet at the same time still accepts the core achievements of modern science.
In practical terms, he offers several pieces of advice, including: Impatience is your friend. If your doctor struggles to help you, you’ll need to help yourself. Trust your own experience of your body. Experiment, experiment, experiment.
After reading Ross’s book and talking with him about it, I was reminded of how often modern medicine is both a vital part of treatment and an incomplete one. For many people, the path to a healthier, better life involves not only a doctor’s treatment but also some combination of physical therapy, dietary changes, exercise, massage, acupuncture, podiatry and more.
In the future, it’s even possible that medical science will come to understand why some of those measures worked better than a doctor’s approach. Medicine is a changing discipline, and it always will be.
In the conclusion of “Deep Places,” Ross ends on a note of optimism:
I am writing this story in part for those chronically suffering, more numerous than the healthy ever realize — to give them hope that their condition can be changed even if it can’t be eliminated, that they might be able to save their own lives even if they feel abandoned by their doctors, that they might, like me, be able to get, not fully well yet, but better, genuinely better.