Long-Haulers: Covid Sufferers…and The Rest of Us Suffering with Chronic Conditions

Yesterday, the New York Times published yet another story chronicling the tragedy of lives still derailed many months after being treated for Covid. The article mentioned that a center for these “Long Haulers” has opened up at Mt. Sinai, and that researchers are studying these unfortunate souls in hopes of gaining better understanding and, hopefully, some cures.

My heart goes out to everyone still suffering. It goes out with deep and authentic sympathy since my own life has been completely derailed by a misunderstood chronic health nightmare. So, I do, truly, understand what it feels like to be less-than-you-once-were; caught, unaware, by a virus that science doesn’t yet grasp.

Here is the difference between me, and the Covid Long Haulers. I’ve been suffering for more than forty years. FORTY YEARS. I didn’t even have a proper diagnosis until relatively recently: an explanation for all those years spent shuffling from one doctor or physical therapist to the next, some treatments in centers of excellence, others in back alleys reminiscent of something out of a Dickens novel.

How wonderful for the Long Haulers to be believed. How wondrous to be recognized. My particular condition—Chronic Lyme—isn’t even recognized by the powers that be. I have something people squint their eyes at frequently. I’ve even been to doctors who say, “Don’t even start with the whole Lyme thing. It’s just… not believable to anyone of true science.”

I’m not bitter that Covid Long Haulers have been believed and embraced, offered instant acceptance and community within the established medical world while I spent decades being labeled “a hypochondriac,” “a woman,” “a mother” a “New Yorker,” “a drama queen,” and “someone needing attention.” I’m not angry, even though I was tested for early on-set dementia in my forties while I simultaneously tried to manage one child with ocular issues, anxiety and asthma, and another with Autism Spectrum Disorder and gender dysphoria.

Truthfully, I rejoice at this development. The embrace and studies surrounding Long Haulers can only help those of us with similar stories of chronic suffering. And that is no small achievement. I am sorry that it has taken a global pandemic to shed light on the reality of post-treatment lingering symptoms, but if this harkens a new era of research for us, I say, “Amen.”

Hopefully now, journalists who write for respected outlets will defer from publishing articles doubting the validity of maladies like Chronic Lyme disease, as it has done in the past. Trust me: those of us who have been sidelined from life’s pleasures don’t need any more negativity cast our way.

Here’s the thing that does bother me: why have Covid Long Haulers been supported, while Chronic Lyme sufferers been shunned? And I do mean, shunned. Shunned to the point that celebrity sufferers like Yolanda Hadid have written memoirs with pleading titles like, Believe Me. What does it reveal about our medical establishments—from training centers, to hospitals, private practices and government institutions?

One thing it tells us is that when people complain of something that a blood test can’t find, or the eye can’t see, our culture has a reflex to discount the messenger, rather than to keep searching for the culprit. Clearly, it’s easier and won’t result in a law suit.

It also tells us that when enough people die, the world is capable of both sympathy and immediate action.

Few people drop dead from Chronic Lyme disease; it’s a much slower death for sure, frequently one of the soul first before the body and mind get there. There are those who do die from syndromes related to Chronic Lyme disease, but few people associate themselves with the victims.

Covid has grabbed our attention because the world stopped. Must that be the case for every misunderstood chronic disease or syndrome?

Like the changes required to truly tackle something really hard—say, global warming—a complete change of ideology is needed; a change that Covid Long Haulers are hastening even as I write these words. Their bodies are being looked at in entirety, not one joint or organ at a time. Their stories of brain fog and exhaustion are being believed, not smirked at while a clinician suggests more cardio or an afternoon cup of coffee.

If this is the moment of greatest darkness that leads to a brighter day in medicine, and the industries surrounding it like insurance and big Pharma, I welcome it.

With both fingers and toes crossed, I hope this global nightmare challenges our researchers to strive ever harder on behalf of all chronic disease sufferers. I hope it encourages patent holders to keep their greed at bay. I hope it allows everyone in the health field to unite, as our new President has urged: unite for long-term healing for everyone.