Vitals

- Long COVID is very difficult to see.

Like almost every aspect of this condition serves to hide its own reality from public view.

This attitude of needing to live with COVID means that you also must live with ignoring the people who cannot move past it.

- Most of the world seems more than ready to move on and forget about COVID.

Its just something we have to live with, right?

But for millions this might not be an immediate possibility, if ever.

We're talking about those suffering with long COVID, a condition caused by the COVID-19 virus that leaves many with an often misunderstood illness that steals brain function, physical energy, and provides a lot of unanswered questions.

According to the Census Bureau and the CDC, As of June 2023, 15 percent of all adults in the US said that theyve had Long COVID symptoms at some point.= And 6 percent say they currently do.

Do the math, thats a lot of people.

But many are telling us that their condition is often being ignored and downplayed by academics and those in the medical field.

But without a blood test or standardized treatment, patients are coming up empty-handed in their care.

And this leads many in vulnerable communities, especially women and certain racial and ethnic groups struggling to find work and validation.

So what's the deal?

Is this medical gaslighting?

Is there more to long COVID than we currently understand?

And if so, what does that mean about living with COVID?

(soft music) Simply put, long COVID is a condition where the symptoms of a COVID-19 infection continue after recovering from the initial infection.

And symptoms can include brain fog, chronic fatigue, and post exertional malaise, a condition in which after doing any minor physical or mental activity, people crash.

You need to rest for a period of time before doing anything else that requires energy.

And you can imagine this is really debilitating.

It should be understood that long COVID affects everyone differently.

The length, acuity, and variance, and symptoms can differ from person to person.

Sometimes symptoms will come and go over a matter of weeks, months, or even years.

And because there isn't a blood test or a medical diagnostic test that can say, "Yes, you have long COVID," doctors are left treating symptoms, not necessarily the condition itself.

The question of medical gaslighting really intrigued and frustrated me as both a doctor and a journalist.

So our team wanted to learn more.

I needed some answers quickly.

So I called in a pro, Ed Yong, an award-winning journalist, science communicator, and author.

He's covered COVID and long COVID for three years now.

- The spring of 2020, I started covering the pandemic.

I was writing big pieces about the scope of COVID, where we were headed, why it was so confusing.

And in the midst of all of that, I was reading accounts from people who were sick for three weeks, four weeks, a couple of months.

My sister-in-law was one of those people.

So it hit quite close to home.

And I started looking for more evidence that this was a wider trend and found plenty of it.

And what was really striking to me when I first wrote about this was most of the doctors and most of the academics I knew hadn't heard of it.

And a lot of these people simply didn't know what to do.

They didn't know what was going on.

They'd had no idea why their bodies were rebelling in this weird way.

- So it's almost like people were viewing COVID as in you were either going to lose your life, wind up intubated, or you're gonna be running in the sunshine, you're completely fine.

And people were missing the middle.

- One of the most common things that happens to people with long COVID is they get told that their symptoms are all in their head, that they're making it up, that they're just being lazy or they have anxiety or depression, none of which actually gels with their experiences.

But they hear this from doctors, from employers, from friends and family.

And that is almost as bad as the actual physical symptoms themselves.

You know, this being taught, having the reality of your illness denied.

- So I got sick back in March of 2020.

So I was one of the first wavers as they call us.

And it was, at first, I didn't take it, you know, I didn't think it was gonna impact me because they were saying that it was older people or people with prior conditions who needed to be worried about COVID.

I was having a plethora of symptoms and my symptoms lasted longer than two weeks.

That was another thing that baffled doctors.

So it wasn't until about two, three months later when I wasn't getting better.

I'm dealing with these doctors and they're not believing me.

- I wasn't really familiar with the gaslighting until I met with my first neurologist, which was about eight weeks after.

And he looked at me and he was kind of just insinuating that maybe I'm having a tough time coping with the pandemic.

And that was really surprising.

I just turned 30 years old.

I was biking 10 miles a day, had a very, you know, back and forth to work, had a very active social life.

Today, I'm 33.

I've spent my entire 30s housebound, severely disabled with this condition.

The idea of a bike ride is a distant memory.

I can't really read books.

I used to listen to music for four to eight hours a day.

I can only listen to music for about 10 to 20 minutes at a time.

I can only watch TV for about 45 minutes at a time.

And so it's the quality of life of this condition is truly unfathomably low.

- People who have long COVID are, for obvious reasons, struggling to work, to pay their rent to do basic activities of daily life.

And there's very little in the way of support for that.

It is possible, of course, to file for disability benefits, but remember that energy, any kind of exertion, including mental exertion, can lead to a crash.

When I report on long COVID, it is very clear to me that patients, many of the patients who have this illness are by far the most knowledgeable people about it.

And I don't just mean knowledgeable in terms of knowing what symptoms they're going through, 'cause that's obvious.

There is this sense of patients as being unreliable, unreliable sources about their own lives, which is stopping people from tapping into that knowledge.

Most long COVID cases are in women.

I think it's much easier to psychologize their illness to say that their very real physiological symptoms are just the result of some emotional or mental thing.

I think people of color face a specific, I think people of color face specific kinds of problems where the usual kinds of racial bias affect their lives.

Also, they get mapped onto their experience with long COVID.

- So that's one of the interesting things because my husband is white and he's an older white male.

And I'm able to be the fly in the wall when he's dealing with the doctor.

So I'm able to see that contrast whereas people say, "Well, you know, maybe you're overreacting," or "Maybe it's not really true."

Because we live in a mixed household, you're actually able to see the differences in treatment firsthand.

It's actually really interesting.

- Do you think this is almost emblematic of the issues with diagnosing and treating patients with other chronic illnesses, such as chronic fatigue syndrome, chronic Lyme disease, or things where the medical community seems to be split?

Does this seem like this is a example of a large scale problem?

- Yes, very much so.

I think that long COVID is obviously new, because COVID has only been around for a few years, but many of these other conditions have been around for much, much longer and have similarly been dismissed.

They have a lot of things in common.

They have a wide range of symptoms that are often subjective and hard to see.

They often disproportionately affect women and they are not things that are a common part of medical training.

First, the very nature of long COVID was dismissed.

And now I think that it's been replaced by a more insidious form of dismissal that it's not like people are saying it's not real, they're saying it's real, but maybe it's not that big a deal.

- Do we know who is at risk of developing long COVID?

Is there things about certain demographics, severity of initial infection that we definitively know that you were at risk?

- So this is one of the hardest questions to answer, right?

Who actually is at risk of long COVID?

So long COVID seems to be able to affect people who've had mild infections, but people also who have been hospitalized.

People who have traditional COVID risk factors, but also people who don't.

Vaccination reduces the risk of developing it, but doesn't mitigate it entirely.

So I know people, plenty of people, who've been vaccinated and then got long COVID after an infection.

So I would sort of say that yes, there are certainly some risk factors, but I'm not sure you could ever say to someone your risk is zero or you are definitely going to get it.

We're just not at that point yet.

- Two years ago, the HHS and DOJ both put out big statements talking about how long COVID was covered under the Americans with Disabilities Act.

Yet, according to stories I hear, some pieces I've read of yours, people with long COVID are still having trouble accessing resources.

Why do you think that is, what's happening?

- I think because being eligible for disability is not the same as actually getting disability benefits.

And there's a massive labyrinth in bureaucracy that exists between those two things, which is very hard for people to access.

Even for someone who doesn't have one of these illnesses, I think just claiming disability benefits is a very involved and very difficult process.

- I was denied my first round of short-term disability, which forced me to try to keep working through, when I clearly should not have been, for 18 months.

I eventually found a new doctor and he was appalled that I was still working after hearing the symptoms I was working through, worked really hard on my case, got me short from disability.

That lasted through last September and at that point I was still completely debilitated.

I remember talking to a social worker and being like, "What do I do now?"

And they said, "Well, I really recommend you trying to get back to work."

I said, "It's simply just not possible right now."

And they said, I'm like, "Well, what about long-term disability?"

And they said, "Well, I really don't recommend applying 'cause they're not going to accept you.

You're just way too young."

And I was like, "Well, what am I supposed to do?

Go homeless?"

I applied in November, I was immediately denied and my case is now finally moving forward after nine months.

- You mentioned a lot of people do not recover.

And millions of people out there, according to surveys, have long COVID, millions are more likely underdiagnosed.

Have you read cases about recovery or any trends that you've seen that are helping people get better?

- Yeah, I think that clearly some people do recover.

And I think if you look at national surveys of the total number of long haulers, you see a big spike during the omicron when, in the initial omicron waves, and then those numbers go down afterwards.

So especially, if you manage to rest well in the early phases, recovery is possible.

I want to be clear that recovery is possible, but it may not be complete.

- So for anyone out there who is suffering long COVID, please know that you're not alone and that there's a massive support group out there who wants to help and will advocate for you.

And physicians, we have to do a better job of listening and working together to help these millions of people who are suffering every single day.

If you go online, you can find long COVID clinics and support groups near you.

And if you see any clinical trials that may apply to you or a loved one, please consider joining them.

On a much lighter note, foodies, you are missing out if you're not checking out the new stuff cooking on PBS Food.

Go on a tasty journey to find the best South Asian food in America on "Spice Road" or swap delicious recipes on "Pan Pals."

This channel has it all, from shows about the history of iconic dishes to food science, you don't wanna miss any of it.

Just don't watch us on an empty stomach.

And that's a wrap for this episode of PBS "Vitals."

Honestly, this was a heavy one, but the story of long COVID is one that we had to tell.

So we wanna hear from you.

and we will see you all next time.