Opinion The special torment of mysterious chronic illness

(Ellen Weinstein for The Washington Post)

It is bad enough to be sick, but worse still to stay that way for months and years on end. And some of the worst agony is reserved for the people with mystery ailments — or those who believe themselves to be suffering from a disease such as chronic Lyme, which most doctors doubt exists.

This ought to make for awful reading, but somehow “The Deep Places,” a memoir of chronic Lyme from New York Times columnist Ross Douthat, manages to be both winning and haunting. Douthat is willing to show himself desperate as well as dauntless, and scrupulously covers the arguments for the nonexistence of chronic Lyme disease, at least as an active bacterial infection that can be treated with antibiotics. Though he also marshals compelling counterarguments to the doctors, many readers will no doubt conclude, along with reviewer Freddie deBoer, that while admiring Douthat’s prose, and courage, “I still don’t believe in chronic Lyme.”

I understand deBoer’s skepticism, and his fear that Douthat’s story will encourage others to pursue quack cures for an imaginary ailment. I cannot swear chronic Lyme is real. But my propensity to doubt is tempered by my own journey into mysterious chronic illness.

When the attacks began, I was a basically healthy woman in her mid-30s — too sedentary, and taking drugs for congenital hypertension, yet nonetheless basically well. They came mildly at first, with a kind of choking sensation in my throat, followed by dizzy spells that I put down to low blood sugar. But candy didn’t help, and the attacks gradually became more frequent, and much worse: waves of nausea, dimming vision, a roaring in my ears, followed by mild mental confusion and an embarrassing tendency to keel over.

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The attacks often happened when I’d had a few drinks, which humiliatingly suggested I’d had too many. But they also came at other times, for no apparent reason. One particularly memorable episode occurred in an airport during the Ebola scare — I have never so thoroughly commanded the attention of an audience as I did when I staggered onto the plane, clearly on the verge of passing out.

I offered the people around me a reassuring lie: an accidental double dose of blood pressure medicine. I told a lot of lies in that era, because I couldn’t bear to confess to a psychosomatic ailment. And medically speaking, there was apparently nothing wrong with me.

My blood results were normal, and an EKG and other tests showed nothing amiss. Perhaps I should have tried harder, but unlike Douthat, I didn’t stumble from specialist to specialist in search of a cure; instead, I mentioned my symptoms tentatively, to a few doctors, and was easily convinced that I probably just needed to exercise or possibly was having panic attacks.

I believed them because it seemed to fit: I was constitutionally anxious and unhealthily torpid. My symptoms did sound like another of those maddeningly subjective illnesses that seem to have a particular affinity for affluent women of a certain age: chronic fatigue syndrome, fibromyalgia and, yes, chronic Lyme. I’d always been skeptical of those diagnoses, and even after I got sick, I frequently exhorted myself to stop malingering and be normal.

This didn’t work at all. Nor did any of the other obvious prescriptions — exercise frequently brought on attacks, and relaxation techniques did nothing to reduce them. The longer it went on, the more afraid to move I became, until by the end, I was reclusive and living in semi-recline, reluctant to enjoy a glass of wine, much less go anywhere I’d have to stand for any length of time. This was the rest of my life, I believed, and despaired.

And then a startling accident: About five years into this, I switched jobs, and insurance. I went to Kaiser Permanente for an intake checkup. As I recall, my blood pressure was a little high, so the nurse told me to rest a minute, then took it again. It was 80/40.

Suddenly there were a lot of people in the room. “Do you feel dizzy?” someone asked.

“Why, yes, I do,” I said, and realized I was in the early stages of an attack. I think I might have said as much, but they weren’t paying much attention; they were ordering a gurney to rush me downstairs where they could run an IV.

“I can walk,” I told the nurse, when the gurney was delayed.

“No, you can’t,” she said firmly.

For the first time, I was less worried than the medical professionals; I knew eventually it would go away if I lay down. They didn’t relax until the IV pushed my blood pressure back to normal. Eventually, a doctor came in and together we traced my attacks back to around the time a second blood pressure medicine was added to my regimen. I stopped taking that medicine, and sure enough, my mysterious ailment went away.

When an acquaintance recently mentioned their skepticism about chronic Lyme, I reminded them about my attacks. “But those were real,” they said. “You could see it on the machine.”

Which is true, and also my point: You could see it on the machine, but it was a blind stroke of luck that anyone ever did. If they hadn’t, wouldn’t I still be taking that medicine?

Nonetheless, I understand why doctors prefer hard, objective criteria to the subjective reports of patients. Psychosomatic diseases exist, and treating them as if they were physical does more harm than good. So does taking unnecessary doses of antibiotics for physical conditions that aren’t caused by bacteria. I sympathize with critics who worry that Douthat’s story, which ends with an almost-cure, might encourage others toward futile treatments. Douthat, who tells his tale with a healthy dose of self-doubt, seems to share some of that fear.

Yet I, like Douthat, also know the peril of deferring to doctors who want to treat only what they can measure. The world contains many quite real ailments that are hard to objectively ascertain, such as long covid, or refractory, such as leprosy, which might have to be bombarded with antibiotics for months or years. Many diseases also mimic other conditions, as chronic Lyme is said to — syphilis, for example, once known as “the great imitator” and caused, like Lyme, by a hardy spirochete bacterium capable of taking many forms to evade our immune systems.

That does not, of course, prove that chronic Lyme is real. But neither does the absence of clear evidence provide evidence of absence. Given the uncertainties, it seems to me far better to risk false hope than to too meekly accept a counsel of despair.