What I Learned from Being Gaslit about Lyme Disease (by Myself and the Medical Establishment)

Newfound sympathy for the Anti-Vaxxer and Climate Denier, among other disturbing turns of events.

1.

I’ve been feeling really good lately. 

Not because of my never-miss-a-day meditation practice or peace in the Middle East, because those don’t exist. But because I’ve been living with undiagnosed chronic Lyme disease for some period of time, and now it finally is gone.

Let me state at the outset that I am not a scientist, doctor, or otherwise medically knowledgeable person. Not only do I have no medical advice to offer you, I don’t even have much for myself. I don’t know anything about spirochetes other than what I’ve read on the internet. (I asked an AI to make one with a face - creepy as usual.)

Midjourney prompt: “Spirochete with a human face.”

But I do know that, since a severe case of Lyme back in 1999, I’ve had periodic re-eruptions of the condition, usually every couple of years, and usually in the winter. The symptoms generally involve intense fatigue, brain fog, and flu-like muscle aches. I test positive for Lyme when tested, and luckily for me, the symptoms clear up completely after a course of Doxycycline – which is not the case for many who suffer from this condition.

Every time this has occurred, without exception, doctors have told me that there’s no such thing as chronic Lyme and that I must have gotten a new infection somehow.  Most recently, a doctor asked me if I had recently gone hiking.  In February.

That was after we got the test results showing my apocalyptically high antibody count.  Prior to that, she declared that I had definitely gotten some totally different, unrelated, and random bacterial infection; that I’d received bad care from another doctor; and that I needed to take a different, powerful antibiotic that only seemed to make the symptoms worse.

It was only when I returned two weeks later that I demanded to be tested for Lyme. She literally rolled her eyes at me.

2.

Only once I was back to feeling like myself did I realize that I haven’t felt this way for months, possibly for years.

I knew that I was “off” but there’s been a series of external explanations for my for mental and physical malaise – most recently, as I’ve written about endlessly, the war in Gaza.  First came the rapes and massacres of October 7. But we didn’t have time to mourn, because before the blood had dried, newly-minted experts on international affairs started prognosticating, demanding, opining, and protesting.  Then came the brutal Israeli response, which surprised no one who knew about this government, yet the weeks ticked by, the innocent deaths piled up, the hostages were mostly still hostages, and yet Hamas still stood.  Then came the extreme anti-Israel protests, which were sometimes pro-peace (i.e. for a ceasefire) but were often pro-war (i.e. for the forced elimination of the state of Israel). And then came the moral panic about antisemitism, fanned by opportunistic politicians and conspiracy-mongers pandering to terrified Jews, along with, of course, actual antisemitism. Progressive Zionists were on defense (against the Left) and offense (against the war) at the same time, while also being traumatized, exhausted, and scared ourselves.  Right up until today.

So if I didn’t feel like myself, the reasons were pretty obvious.

When I look back, though, I realize that I’d been struggling well before last October, mostly for personal reasons: a challenging move, financial anxieties, the ordinary stresses and sleep deprivation of parenting, an abusive work situation, and so on.  Really, going all the way back to the end of peak Covid (which for parents in left-leaning cities meant the spring of 2022) there had been one challenge after another, and before that, of course, there was Covid. 

Now, though, I have no idea what was really going on.  Was it this series of stressors that has been depleting me for the last four years, or was it my diminished mental and physical capacity due to untreated Lyme?  Both/and, probably, though I’ll never know.  I feel like I’ve emerged from months or even years of self-gaslighting.

3.

Of course, I wasn’t the only one doing the gaslighting.  I’ve been failed by a dozen doctors over twenty-five years, including my current PCP, who I really like for a lot of other reasons, but who maintains the medical profession’s official denial that chronic Lyme exists. 

It’s obvious that this certainty is not based on science.  Because when it comes to Lyme, the medical establishment has no idea why Lyme affects the body in such various divergent ways; what the multiple, intersecting causes of Lyme are; what role is played by the natural variation in human immune capacity; and a hundred other potential factors. The CDC only admitted that Lyme is “linked to chronic symptoms” last year.  But instead of saying “we don’t fully understand this, so maybe what several million people are saying has some reality to it,” the official response is “you people are crazy.”

IYKYK; if something like this has happened to you, you know what it’s like.

As a result, I’ve emerged from this period with a lot more sympathy toward those who suffer from Long Covid, Chronic Fatigue Syndrome, and other forms of malaise that our current medical science doesn’t well understand.  I wish there were a bit more openness – not to pseudoscience or hypochondria, but simply to the not-yet-known.

I’ve even developed some sympathy toward some of my least favorite humans: anti-vaxxers.  Not because they are correct – they are not.  But because the overwhelming and quite unjustified arrogance one often experiences in the American healthcare system makes it quite reasonable to doubt what the experts have to say.  There’s a lot of false certainty out there, after all.

Now, I don’t want to overgeneralize.  There are millions of excellent, diligent, cautious, and appropriately humble doctors and scientists out there. Sometimes (as with vaccines), the science is clear. I don’t believe in a conspiracy to suppress the truth, and I don’t believe in pseudoscientific pronouncements that are not based on data. 

But the dismissiveness I’ve experienced, over twenty-five years and multiple encounters with physicians, coupled with repeated, documented evidence that I have a Lyme infection that inexplicably recurs, despite the insistence of multiple doctors that that’s impossible, does give me some sense of what it might be like to be trying, desperately, to report something about one’s own body, only to be dismissed by someone who, let’s face it, is just looking the answers up in a book. 

And I’m one of the privileged ones.

I recognize that doctors’ unjustified sense of certainty could have some benefit.  Many people seek reassurance from doctors and others in positions of authority, and I’m sure many doctors are eager to provide it, even if behind the curtain things are a lot less clear than they may seem. 

But the great value of science comes not from its certainty but from its skepticism, its demand that we question our assumptions and not reach conclusions without evidence. Anyone can be certain about something; as our dear ex-president makes quite clear, false certainty is easy.  Doubt, open-mindedness, the capacity to listen – these are hard.

To repeat, I don’t know jack about the science of infectious diseases.  Maybe the millions of us with Chronic Lyme, Long Covid, CFS and so on are experiencing a constellation of psychosomatic symptoms. While we may experience physical effects in the body, maybe the causes really are all in our heads.  I have no idea.

Then again, I can doubt my own experience in this way, can’t the medical establishment doubt its own fragile certainties?

4.

The most startling thing I’ve learned during this episode is the power of my own denial.  Reading this essay, you might have wondered about it yourself: Given that I had suffered from several Lyme eruptions over the years, how could I not have suspected it earlier this time?  Why did I put up with brain fog for months, and even agree to go on some other antibiotic without having a Lyme test done, when I should have known, from years of experience, that this was obviously Lyme? 

I really don’t know. 

This experience has led me to rethink yet another of my least-favorite groups of humans: science deniers, climate deniers, even election deniers.  Some denial is malicious; when the fossil fuel industry knows full well that the climate crisis is real and that human activities are to blame, but spends millions of dollars to spread lies about it, that is just pure evil.  I still don’t know how these people live with themselves. 

But a lot of denial is denial in the psychological sense.  We don’t know what we’re denying, because we’re denying it. That’s especially true in community. Human beings reach conclusions by consensus; we are affected more by our communities than by evidence.  And when everyone at the church knows that climate change is natural, or manageable, or impossible, or a hoax, well, you’ll believe it too, without even trying to do so.

None of this makes me feel better about trying to tackle these profound, civilization-level problems; on the contrary, it makes me feel worse.  If people don’t even realize that they’re in denial about something, there’s a whole other level of intervention that’s necessary. Deprogramming these mass delusions can’t start with emissions levels or fossil records; it has to start with unmasking the denial itself. 

And having just experienced it, I know how denial is simultaneously invisible and impenetrable.  You don’t even know that it’s there.

And if I can be in this much denial about my own life, then what about all the other things I don’t know? I don’t know if anything happens after we die or if our brains just shut down and we’re done.  I don’t know if God exists, or if God is existence itself, or if the dream or experience or belief in a deity is just a function of the brain, or culture, or both.  I don’t know why I am the way that I am, or how different I am from you, or what my purpose on this planet is, or if there is such a thing as purpose (probably not, right?), or how long the people I love will live, or whether the climate crisis will be apocalyptic or merely tragic, or whether I’ll be safe in my country in 2025 or not.

After my latest dance with Lyme, I feel like despite all my meditation, education, spiritual practice, support, family, and community, I can live years of my life without knowing fundamental aspects of it.  I feel like the angel in Walter Benjamin’s famous image, propelled backward into the future, utterly unaware of where I am or where I’m going, except sometimes in retrospect.  I don’t even know which of my convictions to doubt.

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