What to do when COVID-19 doesn’t go away

Among the many things that nobody knows about the disease that has overturned our lives is how long its effects last. I don’t just mean the possibility of coronavirus damage lurking invisibly in the heart or lungs or brain. I mean the simpler question of what it takes, and how long, for some uncertain percentage of the sick to actually feel better.

Two months ago Ed Yong of The Atlantic reported on COVID’s “long-haulers” — people who are sick for months rather than the two or three weeks that’s supposed to be the norm. They don’t just have persistent coughs. Instead, their disease is a systemic experience, with brain fog, internal organ pain, bowel problems, tremors, relapsing fevers, more.

One of Yong’s subjects, a New Yorker named Hannah Davis, was on Day 71 when his story appeared. When she passed the four-month mark, in late July, she tweeted a list of symptoms that included everything from “phantom smells (like someone BBQing bad meat)” to “sensitivity to noise and light” to “extreme back/kidney/rib pain” to “a feeling like my body has forgotten to breathe.”

That same week, the Centers for Disease Control and Prevention released a survey of COVID patients who were never sick enough to be hospitalised. And 1 in 3 reported still feeling sick three weeks into the disease.

I was probably a long-hauler, under this definition. My whole family was sick in March with COVID-like symptoms, and though the one test we obtained was negative, I’m pretty sure we had the thing itself — and my own symptoms took months rather than weeks to disappear.

But unlike many of the afflicted, I didn’t find the experience particularly shocking, because I have a prior long-haul experience of my own. In the spring of 2015, I was bitten by a deer tick, and the effects of the subsequent illness — a combination of Lyme disease and a more obscure tick-borne infection, Bartonella — have been with me ever since.

Lyme disease in its chronic form — or, per official medical parlance, “post-treatment Lyme disease syndrome” — is a fiendishly complicated and controversial subject, and what I learnt from the experience would (and will, at some point) fill a book.

But there are a few lessons that are worth passing along to anyone whose encounter with the pandemic of 2020 has left them feeling permanently transformed for the worse.

Impatience is your friend

With most illnesses, get some rest and drink fluids and you’ll probably feel better, is excellent advice, which is why doctors offer it so consistently. But if you don’t feel better after a reasonable duration, then you shouldn’t just try to endure stoically while hoping that maybe you’re making microscopic progress. (I lost months to my own illness taking that approach.) If you feel like you need something else to get better, some outside intervention, something more than just your own beleaguered body’s resources, be impatient — and find a way to go in search of it.

If your doctor struggles to help you, you’ll need to help yourself

Modern medicine works marvels, but it’s built to treat acute conditions and well-known diseases. A completely novel virus that seems to hang around for months is neither. Add in all the other burdens on the medical system at the moment and the understandable focus on the most life-threatening COVID cases, and it may be extremely difficult to find a doctor who can guide and support a labyrinthine recovery process. So to some uncertain extent, you may need to become your own doctor — or if you’re too sick for that, to find someone who can help you on your journey, notwithstanding the absence of an MD beside their name.

Trust your own experience of your body

Yong’s Atlantic piece notes that many COVID long-haulers “have been frustrated by their friends’ and families’ inability to process a prolonged illness” and have dealt with scepticism from doctors as well. In such circumstances, it’s natural to doubt yourself as well and to think maybe it really is all in my head.

In some cases, presumably, it is: Hypochondria certainly exists, and the combination of high anxiety and pandemic headlines no doubt inspires some phantom illnesses. But for a field officially grounded in hard materialism, contemporary medicine is far too quick to retreat to a kind of mysterianism, a hand-waving about mind-body connections, when it comes to chronic illnesses that we can’t yet treat. If you don’t have a history of imagined illness, if you were generally healthy up until a few months ago, if your body felt normal and now it feels invaded, you should have a reasonable level of trust that it isn’t just “in your head” — that you’re dealing with a real infection or immune response, not some miasma in your subconscious.

Experiment, experiment, experiment

There is no treatment yet for “long-haul” COVID that meets the standard of a randomised, double-blind, placebo-controlled trial, which means that the US Food and Drug Administration-stamped medical consensus can’t be your only guide if you’re trying to break a systemic, debilitating curse. The realm beyond that consensus has, yes, plenty of quacks, perils and overpriced placebos. But it also includes treatments that may help you — starting with the most basic herbs and vitamins and expanding into things that, well, let’s just say I wouldn’t have imagined myself trying before I became ill myself.

So please don’t drink bleach or believe everything you read on Goop.com. But if you find yourself decanting Chinese tinctures, or lying on a chiropractor’s table with magnets placed strategically around your body, or listening to an “Anti-Coronavirus Frequency” on Spotify, and you think, how did I end up here?, know that you aren’t alone, and you aren’t being irrational. The irrational thing is to be sick, to have no official treatment available, and to fear the outré or strange more than you fear the permanence of your disease.

The internet is your friend

For experimental purposes, that is. My profession is obsessed, understandably, with the dangers of online COVID misinformation. But the internet also creates communities of shared medical experience, where you can sift through testimonies from fellow sufferers who have tried different approaches, different doctors, different regimens. For now, that kind of collective offers a crowdsourced empiricism, an imperfect but still evidence-based guide to treatment possibilities. Use it carefully, but use it.

Ask God to help you. And keep asking when He doesn’t seem to answer.

I mean this very seriously.

You can get better

I said earlier that my own illness is still with me five years later. But not in anything like the same way. I was wrecked, destroyed, despairing.

Now I’m better, substantially better — and I believe that with enough time and experimentation, I will actually be well.

That belief is essential. Hold on to it. In the long haul, it may see you through.

— Ross Douthat is a noted American author, blogger and columnist.