Cyberchondria

I WAS catching up on old podcasts when I came across the November 13, 2009 episode of On the Media — this segment in particular (audio below) — in which a condition dubbed "cyberchondria" was discussed.

This has some personal significance because it touches on my own experience with being diagnosed with sarcoidosis last October. Confronted with a disease I'd never heard of (imagine me here collapsed to my knees, shaking my fists at the sky and railing, Charlton Heston-like in my anguish, "Where is my awareness month? Where? Where?!"),^[1] I naturally turned to Google to help me find more information. I came across forums and blogs where people discussed sarcoidosis, and more often than not, they related agonizing, emotional, hopeless stories of their lives with the disease. After an hour or two of reading harrowing personal tales in this vein, I became despondent, convinced that my organs were already in the early stages of a grim succession of inevitable collapse.

Seven months after the first symptoms appeared, I'm still alive. My lungs have not given out. I have not gone blind. As I write this, I still have tightness in my chest — it comes and goes, usually along with fatigue and swelling of lymph nodes — but there are no other significant symptoms. The optometrist has said that the granulomas have not spread to my eyes. The radiologist's X-rays show no increased inflammation in my lungs. The pulmonologist has wired me up, stuffed breathing tubes into my mouth, and put me through endurance tests on an exercycle, only to find that everything is functioning as well as or better than it ought to. My general feeling after each one of these appointments is one of mild relief.

That experience differs slightly from rigidly defined cyberchondria, which often begins with self-diagnosis. A pain in the side or, in the case of the reporter interviewed for OtM, a twitch in the eyelid. I had actually been to the doctor that very morning on the day my Internet trawling began, and that doctor had delivered his diagnosis in full confidence. So at that time I wasn't looking to match my perceived symptoms to the appropriate disease, a blind man choosing from a police lineup; I was imagining the already palpable symptoms of a valid disease in their most advanced stages, a morbid exercise in unbridled imagination. However, the feeling of despair that persists despite the accelerated heart rate is, I'd guess, similar to the one that cyberchondriacs feel when they connect the stiffness in their finger to the onset of gangrene.

This is the point where I might be expected to lament that I too was cyberchondria's dupe, to rage at the misleading preponderance of gloomy narratives on those forums, and to curse myself for allowing my vulnerability to cloud my skepticism. Or I might launch into an argument that cyberchondria is yet another media myth, dreamed up by some trend-spotting journalists to shame the gullible, and that nothing but good can come of the surfeit of health information that countless blogs and support forums make available (more often than not via Google) to the layman.

But it's neither of those. And both of them.

I'm grateful to those across the Internet who have recounted their sad experiences with sarcoidosis, because, though dire, they convey the varied and unmitigated potential of this disease. No sugar coating, no punches pulled. From them I know what kind of awful developments the future might hold; though it's mild now, there's no guarantee that sarcoidosis won't take those more menacing forms in my own body later on. And far from resenting OtM for suggesting that we're too irresponsible to handle this egalitarian deluge of unfiltered information, I'm glad to have heard that broadcast, however delayed, because it kept some of those runaway fears I had at the outset in check. Often we need to be shown the extremes in order to find our way to the balance at the center.

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Apparently there is a National Sarcoidosis Awareness Day, maybe in October, and there might even be a whole month devoted to it, which might possibly be in April, but no one seems to know for sure. ↩