Why YOU should care about Lyme Disease: a response to Michael Specter
Okay, I have no delusions of grandeur. I know I don’t have tons of followers, and I also know that not many people care deeply about Lyme Disease outside the community. I mean, when you have either never heard of Lyme or think of it as nothing worse than a bad cold, we sound like a bunch of hypochondriacs and crazy conspiracy theorists.
But this New Yorker article about Lyme and in the ensuing NPR interview, while palatable and just enough shocking to engage the average person’s knowledge of Lyme, is dangerously misleading. He also went so far as to suggest that we, the Lyme community, are not scientifically educated. I’d think it’s safe to say that we are more educated than he.
But threats to your own health beside (educate yourself on that here), why should you care about our struggle? Why should you, average healthy human, pay attention to those who are dismissed as whiny, hypochondriac, conspiracy-mongering “loonies*?”
The conflict surrounding the treatment of chronic and late-stage Lyme is a powerful lesson on the broken nature of our healthcare system. Between doctors who use guidelines and treatments that have barely changed in about thirty years to the insurance that refuses to pay for “experimental” medication, a lot of Lyme patients are left on the periphery of medical care. Some highlights from the battlefield: institutionalized sexism, the mental illness taboo, quackery, ablism, inadequate access to information and treatment, and the relentless persecution of trained doctors who try to help those that the regular medical community has turned away.
This does not happen only to Lyme patients— we aren’t special snowflakes who are the only ones marginalized by the established medical system. Not by a long shot. Not to diminish the terrible things I personally have undergone as well as my peers, but there are other marginalized groups out there who suffer just as bad if not worse because of the established medical system. And that’s a scary though.
*This is actually a quote. Michael Specter actually said this. It’s in this NPR interview, used to refer to the chronic Lyme medical community.