Sunshine Mugrabi

Could long COVID spell the end of medical gaslighting? Let’s hope so.

When Kathy Flaherty, a 53-year-old attorney and nonprofit executive director, got COVID-19 in March 2020, her friends said, “see you in two weeks.”

Two weeks came and went, but she was no better. A former marathon runner, she could only take a walk around her backyard before she was exhausted and had to lie down and rest.

To Flaherty’s surprise and dismay, her doctor suggested that the problem might be psychological rather than physical.

“It was so disempowering and painful,” she said. “She’s known me for decades.”

Now, a year later, Flaherty is doing better, but is still struggling. She’s cut back to half time at work and is getting disability for the other half. She’s also learned she has to say “no” to many things—something that, as a lifetime go-getter, she never did before.

Wilhemina Jenkins, 73, has much the same story. Like many COVID-19 long haulers, she found herself unable to function after the initial symptoms of her virus were resolved.

She tried to make herself do things, only to be back in bed for days afterwards. She was working on a Ph.D. in physics but was unable to complete it because, as she put it, “my ability to think went out the window.”

The difference is that Jenkins, who is African American, got sick in 1983. Back then, the problem was dubbed “chronic fatigue syndrome.” It was mocked by late night hosts and comedians, and called the “yuppie disease” in the mistaken notion that it only affected upper middle class white women. Jenkins struggled to get a diagnosis because as an African American she didn’t fit this stereotype.

It’s now known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). For decades, most doctors treated it as psychiatric. An entire pseudoscience grew up around it, that combined cognitive behavioral therapy with something called “graded exercise therapy.”

In recent years, it’s gotten some respect—though many doctors still believe it’s at least partly psychosomatic. Research into the illness has been thin on the ground.

All that might be about to change.

The symptoms of long COVID and ME/CFS are pretty much identical. They include being exhausted after minor bouts of activity, cognitive problems such as brain fog and memory issues, breathing issues, and neurological symptoms, among others.

With the pandemic sweeping through the population, the number with long COVID has mushroomed. While it’s difficult to pinpoint exactly how many people have it, studies so far suggest it could be anywhere from 10-30% of those infected.

“We saw this coming a mile away,” said Jenkins, who’s been a patient advocate for those with ME/CFS since her official diagnosis in 1988. “We knew this was going to happen because it’s a post-viral deal.”

Many who have long COVID are young and had mild or moderate cases that didn’t require hospitalization. Even children are getting it. With over 30 million cases of COVID-19 in the US alone, that could mean millions of people are struggling to manage their lives.

“I think we’re at a tipping point,” said Jaime Seltzer, Director of Scientific and Medical Outreach at #ME Action, an international advocacy organization. “To say that all of these people are just imagining the exact same symptoms is not working. The psychosomatic approach has reached a crossroads.”

If so, this could represent a sea change in how medicine deals with complex chronic illnesses of all kinds. For decades, the rule of thumb was that if a patient’s symptoms didn’t fit the known boxes, chances were they were creating at least some of them with their minds—in other words, it was psychosomatic.

This wrongheaded view may be kicked to the curb thanks to long COVID. In other words, medical gaslighting could be on its way out—something many chronic illness patients (myself included) think is long overdue.

The nation’s top doctors agree that long COVID is real and needs to be better understood. White House Chief Medical Advisor Dr. Anthony Fauci has spoken about it, and there’s a page devoted to it on the CDC website.

Perhaps most significant, the National Institutes of Health (NIH) recently announced $1.15 billion in research dollars to be poured into studying long COVID. Because post-viral illnesses all tend to look the same, this research will shed light on others like it, including ME/CFS.

This has Seltzer hopeful. ME/CFS research has never had this kind of cash infusion. More research will provide the kinds of answers that its sufferers have been waiting for decades to get.

The fact is, patients with difficult or complicated conditions deserve better than what we’ve been getting. Too many of us have been subjected to the medical trauma of being told our problem is all in our heads.

Here’s hoping the bright spot in this pandemic is that medicine wakes up to its prejudices and makes lasting changes as a result. It’s high time it did.

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The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19. This post is not intended as medical advice.

While much of the rest of the world is making its way back outside, nothing has really changed for me. It’s as if it’s still February, when the novel coronavirus first spread itself around the globe. My husband and I are still confined to our apartment.

When we do go out for a walk, we have to be careful to stay off the groomed paths in our apartment complex. The danger is the other walkers out there. I can’t always see them in time. Because of an injury I suffered six years ago I’m unable to turn my head.

So, we walk along the roadway that circumvents the buildings, my husband warning me if other walkers are coming our way so I can stop and avoid breathing in their air. It’s less scenic there, but it’s better than spending all day inside the apartment.

Following my injury, I have suffered from chronic pain in my face, neck and head. If I place anything on my face—no matter how soft—it triggers an attack of chronic regional pain syndrome (CRPS), during which pain spreads across my skin and digs in, becoming intolerable. The pain can persist for hours, days, or weeks. This means I can’t wear a mask. In the age of coronavirus that has become a major problem.

I don’t want to infect anyone else, and I’m also concerned about my own safety. But it’s becoming more difficult, unpleasant, and complicated to get through these days.

All our groceries are either delivered or brought out to the car. We order most other things we need online. We only go to one local park on weekdays when we know it will be empty enough and can steer clear of people.

Like everyone else, I had hoped that my life would return to normal once restrictions were lifted. Of course, I knew that my version of “normal” wouldn’t be the same as it is for most people. But there are many things that made my life enjoyable. Taking a walk along the Delaware River, where geese fly overhead and sailboats make their way downstream. Trips to the farmers market, or the country store that sells bread, flowers and gourmet items. Bringing my wheelchair to the mall to window shop and have tea at Starbucks.

I miss these small pleasures. And now, I wonder when, or if, I’ll ever enjoy them again.

Even worse, I’m no longer getting the care I need. I can’t do physical therapy because the company I used doesn’t offer virtual sessions. I can’t risk seeing the therapist in person three times a week, especially since I can’t wear a mask. I tried other physical therapists, but they require an in-person assessment.

I also need medical interventions to manage my condition. When I recently called to set up the MRI my neurologist had ordered, the technician told me I couldn’t get one without wearing a mask.

When I asked if she was refusing to accommodate me, she said the governor had made it a requirement for every patient, no matter their medical condition. I also tried to set up an appointment with a specialist I need to see. I asked for a telemedicine appointment, but the nurse told me that I had to meet the doctor in person for my first appointment. She said that the requirement I wear a mask came from the Centers for Disease Control and Prevention (CDC), and that they were unwilling to make an exception for me, even though I have a well-documented medical condition.

I called my state COVID-19 hotline. The woman I spoke with said that doctors’ offices have the leeway to accommodate people like me. They don’t have to, but they can. So, with conflicting information about where the mask requirement comes from, I can’t figure out how to negotiate my way through this. Meanwhile, my condition is worsening and I’m being deprived of necessary medical care.

The CDC has recommended that everyone wear masks when in the public sphere unless they’re under two years of age, have trouble breathing, or can’t remove one without assistance. I’m not a lawyer, but “recommended” sure doesn’t seem like a legal requirement to me. These recommendations are also too narrow and doesn’t take into account the many disabled people who can’t wear masks for all sorts of reasons.

People with hearing impairments need to be able to hear others and often rely on lip reading. Those who have sensory issues due to autism are also struggling with this requirement. People who have asthma may be unable to get a breath when their nose and mouth are covered. According to Erin Ekins, an autism campaigner, masks can send those with autism into a meltdown, where the body stops functioning properly. And there are plenty of people with facial pain who, like me, can’t tolerate the mask under any circumstances.

An article in the Journal of the American Medical Association advocates a more flexible approach. As the authors point out, there are many reasons a person might not be able to wear a mask, including facial deformities and trauma. “Thus, a delicate balance arises between the public health interest and individual disability modifications,” the authors write.

Many who can’t tolerate masks have been subjected to abuse in person and online. A video of a deafblind woman, Karolina Pakenaite and her sister being harassed on public transportation went viral. “I can no longer stay silent about this as I keep experiencing attacks and hearing similar experiences from others too,” said Pakenaite in a BBC article.

Part of the problem is that masks have become politicized. I’ve read about people faking disabilities so they can go unmasked by downloading phony cards that say they’re exempt. If people are truly doing this, it doesn’t help people like me who have legitimate medical reasons for being unable to wear a mask.

As the pandemic wears on, there needs to be greater clarity and official guidance about what constitutes a legitimate need for an exemption from mask wearing. Much as I don’t want to risk myself or others, I can’t remain in full lockdown mode for what could be years. It’s time for a more nuanced conversation about this issue. Too many disabled people are being left out in the cold.

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