Madison Area Lyme Support Group

by Jennifer Crystal

This past January, the New York Times published an article entitled “What if You Never Get Better From Covid-19?”. Many Lyme patients sent it to me in frustration. “This is just like Lyme disease!” they exclaimed. “We haven’t gotten better, either. Why is everyone talking about COVID long-haulers when we’ve been suffering for years?”

I hear that frustration. I also think it’s precisely this attention on long-haul COVID that will finally shed light on, and bring credibility to, persistent Lyme disease.

In fact, the article itself draws comparisons between COVID-19 and Lyme disease, as well as myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS). As with Lyme disease, the cause of ongoing COVID-19 symptoms is now under investigation: is it ongoing infection? Is it a post-acute syndrome? Is it an immune response? These are questions that have echoed in the Lyme world for years, causing polarizing debate that leaves some patients fighting for validation, diagnosis, and treatment.

Now, that struggle is coming out of the echo chamber and into the limelight—pun intended—in a world that has newfound understanding of long-term illness and its effects. Words like “immunocompromised” and “long-hauler” were not part of the general lexicon before COVID-19, even though they’ve been part of Lyme patients’ vocabulary for years. Now these words are vernacular, and that’s good news for Lyme patients, ME/CFS patients, and anyone else struggling with a complex illness that strikes different patients in different ways. As the article states, “The Lyme problem is underrecognized but immense.” One silver lining of a horrific pandemic that has killed half a million Americans and left countless others still struggling is that it’s bringing recognition to illnesses that have long caused long haul suffering.

Indeed, just a few weeks after the aforementioned article was published, New York Times Opinion Columnist Ross Douthat wrote “Long-Haul Covid and the Chronic Illness Debate: What persistent Covid cases might have in common with chronic fatigue syndrome and Lyme disease, and why it matters”. A Lyme patient himself, Douthat wrote, “Living through the coronavirus era after spending so many years in the world of Lyme disease is a strange experience because you can see all kinds of different pieces of the tick-borne epidemic refracted strangely in the Covid pandemic—disputes over testing, mysterious and shifting symptomatology, expert failures and medical populism, and controversies around what it means when the disease just hangs around indefinitely.”

Even back in spring 2020, when COVID-19 testing difficulties were at their height, people were taking notice of the similarities to Lyme disease. I was interviewed on this topic for an article on Undark.org called “In the Uncertainties of Lyme Testing, Lessons for COVID-19”.

One important distinction that Douthat notes between long-haul COVID and Lyme, ME/CFS and other illnesses is that “we’re taking the lived experience of long-haul [COVID] patients seriously—probably because we have so many of them all at once—instead of treating them as weaklings or hypochondriacs.”

To that, I can speak personally. For years before I was diagnosed with Lyme disease, babesiosis, and ehrlichiosis, I fought just for people to believe that I was sick; that my flu-like fatigue, insomnia, hallucinogenic nightmares, trembling hands, difficulty concentrating, systemic hives, and fevers were not psychosomatic. Then, once I was properly diagnosed, I fought for understanding from people who literally did not believe in my illness—as if a documented physical disease is simply an opinion or mystical power one can choose to believe in or not.

Conversely, when I first developed COVID-19 symptoms in March 2020, not one person questioned whether I actually had COVID-19, even though I had a (false) negative test. No one said, “Oh, you must have something else” or, “It must just all be in your head.” They knew that my shortness of breath, dry cough, low-grade fever, and loss of taste and smell meant COVID-19. When the positive antibody test came back in June, it was simply validation of what everyone already knew to be true.

When I had COVID-19, I only had to fight to get well, not to be believed.

What a difference that validation meant, as I discussed in my “Comfort in Solidarity” post. I want that type of understanding for all Lyme patients, in all stages of illness. I believe the COVID-19 pandemic will help get us there.

GLA is offering a free webinar, “COVID-19 Vaccines and Lyme Patients: What You Need to Know” on March 3rd at 6:00 p.m. You can register here.

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Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com.