Before we get started today, I want to tell you about a podcast called Unladylike. It's a show that finds out what happens when women break the rules.

Each week, hosts Kristin Conger and Caroline Irvin tackle questions about modern day feminism from The Bachelorette to abortion access through their trademark obsessive research.

For a very special episode this week, Unladylike has teamed up with the Cut to dig even deeper into sexting and dick pics.

It features myself and writer Allison Davis and oh my God, Kristen and Caroline asked such good questions. It was very fun to listen.

You can find Unladylike on Stitcher Apple podcast or wherever you listen to podcasts. The cut, the cut, cut, cut, cut, the cut. The cut. All right, and say hello to the podcast, people, who are you? Hello, my name's Anna Solman and I'm a senior writer at the.

You've been working on this story for, like, a minute, right?

Yeah. I started looking into this early summer, which was when the discussion about long haul covid was only sort of starting to bubble up.

What is what is long haul covid. Long covid refers to the fact that some people don't get better after a couple of weeks, it's having these lingering symptoms that persist in some cases for months. I spoke to a lot of women who are struggling with long haul covid they weren't being taken seriously by doctors.

So I feel like the story is actually kind of the apex of twenty twenty and the past four years where there's been this recurring theme about believing other people's experiences, whether that is a sickness, assault, racism, just like understanding that maybe your experience is not the experience of everyone and understanding that other people are experiencing traumatic things that maybe you don't understand or maybe are hard for you to, quote unquote believe, you know what I mean?

Yeah, that certainly makes sense. And I definitely agree with you. But I think at the same time, there's so much misinformation and propaganda on social media and a lot of people speaking out does happen on these platforms. And I think that's what makes me a little wary and inclined to take things I read online with a grain of salt, which isn't to say it's not important. I mean, this is a brand new illness. And, you know, a lot of the time the doctors don't really know that much more than the patients.

And we're all learning together in real time, which is kind of amazing and kind of terrifying.

I think what's really interesting is that right now we are seeing the first draft of history be written when it comes to our understanding of covid. And the people that I've talked to are furiously trying to rewrite that draft. They're trying to change the narrative about what it is and have patients voices be the center of that story. And I think that that's really profound and has a lot of implications for how we will understand the disease in the future and how we will understand other diseases.

Who do you talk to you for this story? For this story? I spent a lot of time talking to this woman named Shamir's Smith. She's in her late 30s and she is a middle school teacher in Baltimore, Maryland.

I miss the kids like terribly and they missed me.

It was March and Schmeer school had been shut down for two weeks and the kids, they were texting me, they were driving me on Instagram and hit me up, you know, or Facebook and telling me we want to come back to school when we come back to school. But just before the students were about to start taking classes online, Shamir got sick.

I've just remember being so fatigued that entire day, I could not stay awake every chance I got. I was sleeping on the couch, in the bed, on the floor. I just was so tired.

She was worried it might be covered. So she went to see a primary care doctor. He told her she had a sinus infection and gave her some Flonase. But by day to Schmeer was pretty sure it wasn't just a sinus infection.

I went to the hospital that was my first hospital visit.

But doctors there wouldn't give her covid test because at that time in Maryland, they were not testing anybody unless you had a cough, shortness of breath or fever. And because my symptoms were not as prominent, then, I could not get anybody to give me a test.

So the doctor sent her home and told her to quarantine just in case, and that if it was covid, she should start to feel better in about a week and recover in two weeks. So the next week, Schmeer had a zoo meeting with her coworkers to get ready for online teaching, but she still felt really sick. And on top of all the physical stuff, her brain felt like it was broken.

I think I probably could get through probably about 20 minutes of the zoom zoom meeting. And I just I couldn't concentrate on what was being said and I could not focus. I couldn't think I had to quickly make a decision to let my my coworkers know. My bosses know that I couldn't I couldn't I couldn't work. And that was. That was hard over the next couple of weeks, Shamir symptoms kept getting worse. One day she tried to clean her apartment and she passed out and woke up on the floor of her bathroom.

Everything in her body felt wrong.

I just felt like a demon jumped in my body. I was just full of malaise and just so tired. I felt like there was a golf ball in my throat. Shabbier had some of the classic covid symptoms, like a cough and a fiery feeling in her lungs, but she had other symptoms she didn't associate with covid at all.

Numbness entangling in my fingers, my arms, my legs, calf pain, muscle spasms. I've had night tremors. I've had heart palpitations. It feels like there's a pin in my eye now. I've never had that before. Prior to five months ago, I had an advanced cataract and this left I can't see out of it. I can honestly tell you I can't even.

I can't believe I'm still living because I was so sick the first month that I thought I was going to die. Since March, Schmeer says she's been to the hospital over 10 times, the doctors did eventually start giving her Kova test just to be safe, but they kept coming back negative and the doctors kept saying it must be something else. Oh, you just got a headache.

Oh, just go home, oh, you're anxious, you're probably anxious, are you stressed out about anything? And I will be like, hey, you know, like I'm sick. You see, I'm sick. I can barely, like, lift my head off your pillows. I could I was sick and I was told several times, oh, you tested negative.

So you're fine after being told this enough times, she was like, yeah, maybe this is all in my head.

And I was like, you know what? Maybe you're right. Maybe you're crazy. Maybe you are crazy. Maybe what they're telling you to do. Maybe you should check yourself into some mental health facility, because clearly you've taken every test.

Every test has come back negative. Clearly, you must be the problem at this point.

She was spending a ton of time online trying to figure out what was wrong with her. She was reading different articles, looking at the CDC medical journals, but nothing that she was reading really captured what she was going through. And then one day she found a New York Times op ed. The author, a woman named Fiona Loewenstein, described four weeks of intense headaches, trouble focusing and short term memory loss. And it sounded exactly like what she was experiencing.

The only difference was that Fiona had tested positive for covid.

And when I read it, I cried and I was like, this girl. She she she's telling my story about lingering symptoms that just won't go away.

The article linked to a support group that Fiona had co-founded for people who are experiencing covid symptoms for much longer than the expected. Two weeks after the piece came out, two thousand people signed up for the support group, including Schmeer, and it has been the most therapeutic.

A cathartic, loving, kind place to share many of my experiences with this virus, suddenly Shamir was in touch with thousands of people around the country and around the world who were all dealing with a lot of the same medical mysteries.

She was they all met on Slok.

My symptoms are all over the place. It's a fickle, vicious virus. I'm frustrated that there are no answers. There's no roadmap other than what my body is asking for. Rest, support and a chance to hear. My biggest concern is whether I'm still contagious. What's everyone else doing in this 20 plus day quarantine? I'm so grateful to have found this group. The group came out of an organization called Body Politic, which is a queer feminist wellness collective, the group has about nine thousand members.

Now there's over 70 channels discussing all these different aspects of what they call long haul covid or long covid. What makes the body politic support group kind of interesting is that it was founded on the premise that you could have long covid without ever having had a positive test result right away. Schmeer met lots of other people there who tested negative and were struggling to get the care they needed.

That was the most validating because I had so many debilitating neurological symptoms that that's the only place I wanted to be because there were other people who would just like me.

And then I would think to myself, Oh, well, I'm not crazy. Somebody else in a different time zone on the other side of the world is experiencing the same exact thing.

I felt support groups are really important for the mental health and wellbeing of long haul covid sufferers. But they've also actually been really important for helping us figure out the long term nature of this virus.

I think kind of we're all the same type of personality in that we really want answers.

This is Hannah Davis. She's on week thirty three of covid symptoms. Hannah Davis, she's a research queen.

Early on in the pandemic, no one was really thinking about the long term effects of the virus. In April, a couple of members of the group who had research experience came together to change that.

Hannah is one of the leading members of the patient led research group.

The group's first big project was creating a survey of their members and members of other online support groups. They wanted to find out about people's symptoms and the stigmas they were experiencing and how the whole thing was impacting their life, like having to be completely isolated for months at a time. They ended up getting over six hundred respondents and they published their findings on their website at the beginning of May, and the scientific community started paying attention. It was pretty immediately obvious for us as researchers that we were getting answers much faster than other researchers, just from having lived the experience early on in the pandemic, a template was set that covid looks one certain way, that it affects mostly old people, that it's a bad flu.

But as we've come to learn, there, a lot of missing pieces to that picture.

A lot of studies have been done only on hospitalized patients, and the demographics are incredibly different from what we found with long haulers like we're actually pretty young. The average age of our survey was between 30 to 49, where over 10 percent was less than 30, where the hospitalized patients are older, they're male, where our skewed to female slightly.

From the survey, they came up with a long list of commonly reported symptoms. These symptoms went way beyond what was listed on the CDC's website.

One thing we're really trying to do is, you know, collect those symptoms, list them, get data on them and put it out scientifically. So there's kind of a, you know, a reference that people can look at and be like, oh, it's actually thousands of people who are experiencing these symptoms across cardiovascular and neurological and respiratory and general immune like I guess how do you deal with the issue of like.

Potentially, some people who might respond to your survey, like we don't know if they for sure had it or not, one of the things we did is we separated out the groups into positive and negative and we looked at 62 symptoms.

And across 60, they were statistically significant, the same between the positive and negative group. And that, to me, really implies that we're dealing with the same thing. The main difference we found was that the positive group was tested earlier and the negative group was tested later. I think that testing is is almost valueless. I really think we need to be diagnosing on symptoms. I really think clinical diagnoses are vital.

It's not just the patients who feel this way. There are also doctors who argue for the importance of looking at symptoms over test results.

covid is complicated. It affects many organ systems and many of the people who have experienced covid-19 have gone on to experience prolonged symptoms.

Dr. David Patrina works with the Center for Post Covered Care at Mount Sinai in New York City. The center cares for people with long covid or is he officially calls it post acute covid syndrome?

I think first and foremost, and a message that we need to get out certainly is a large proportion of individuals presenting with post acute covid syndrome do not have positive PCR tests, which is the nasal swab test and do not have positive antibody tests. They even have negative or unknown statuses in this front.

According to Dr. Patrina, the testing can be pretty finicky. If you get tested four to 12 days after infection, there's a 20 percent chance that you'll get a false negative. That's pretty high. And if you wait longer than 12 days after infection to get tested, that false negative rate can go up to over 60 percent. And what's a negative result goes on a patient's record. The deck is really stacked against them.

That's the moment where a whole lot of gaslighting starts happening when you have such a high false negative rate. The idea of having a diagnosis on such an unreliable test is pure medicine. It's pure science, and we deserve a class of doctor who doesn't do that. We need to get the message out that you're not doing your job as a clinician if you just look at that test and immediately start to dismiss someone's stories.

I admit that when I first learned that the body politic support group accepted people who just thought they had covid, I was a little skeptical. I definitely think there's something really progressive about patients speaking out against the medical establishment that it has a long history of ignoring disbelieving women and women of color. But I've also reported a lot on the darker side of online health activism, like the point where a healthy skepticism of authority starts to slide into, you know, dangerous anti-tax views or snake oil wellness therapies.

Social media can be a really powerful tool for building community, but it can also be a really dangerous echo chamber full of conspiracy theories. And there's so much misinformation about covid online. So no matter how diligent body politics moderators were, it's still the Internet and not everything you read, there is going to be 100 percent reliable. But both things can be true.

And Dr. Petrina really helped me see the connection between them because it does lead to this rabbit hole of well, I went to five doctors. They didn't believe me. They're going down these wildly, sometimes dangerous alternative medicine rounds. This is how it happens. This is how you create radicalization. You consistently tell someone that's something that they are authentically feeling very, very strongly is not reality. That creates a radical mindset. So this is really on the doctor side that the doctors need to be listening to their patients with a brand new disease like covid.

Listening to patients isn't just about having good bedside manner.

It's the thing that's going to help us figure this disease out as a scientist in terms of patients or on research, I think that science should look in all directions. And so I strongly disagree with scientists who say there is only one way to do an experiment, that there is only one way to learn about a condition.

And is the research that's come out of the body politic patient research group, is that something that you've used to inform your research?

Absolutely. We both use it to inform our work and the sorts of questions that we ask of, as well as comparing it to some of the surveys that we have run, because we also run surveys and send them out to different patient populations and have looked for consistency between the two. And the reporting is highly consistent.

Some of the symptoms that popped up again and again in Patrinos research were things like fatigue, heart palpitations, GI issues, brain fog. And these are the same symptoms that Shamir and the other members of body politic have been talking about on Slack for months.

I tell my students all the time, you know, information truly is power. After the break, Shamir uses that power to take her diagnosis into her own hands.

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We now have two point three million people incarcerated in America.

Less than seven percent of them are incarcerated for a violent crime.

That's Attorney Geoffrey Robinson, director of the ACLU Trone Center for Justice and Equality.

His work inspired the making of Who We Are, a podcast by Ben and Jerry's and produced by Vox Creative, who we are.

A Chronicle of Racism in America is hosted by Peabody Award winning journalist Carvelle Wallis.

Surely you knew this was a racist country. What does that mean for us today? The prison population in the United States has increased 700 percent since 1970. Black Americans make up almost 40 percent of it.

We didn't get here by accident. I didn't know these things because I hadn't been taught them, and then the question is, why wasn't I taught them? Because this information, it may be hidden, but it's hiding in plain sight.

Who here takes a historic look at the disease of racism in America and traces it back to its tipping points? This includes the tipping point we're at today.

I think Americans are watching and thinking and looking at this issue in ways they never have before. And that's why I say this is our last, best chance, because if we don't get it right this time, where America is headed is someplace I don't think anybody wants to go.

How do we make our last best chance count? Listen to who we are, a podcast by Ben and Jerry's and produced by Vox Creative. Now streaming wherever you get your podcasts. It was July and Shamir was back in the hospital again. I felt like somebody had taken a lighter and had started in the back of my neck and had taken the lighter and had kind of circled it all around my head and at the top of my scalp here. I felt like my whole head ended up being on fire.

What's different about this hospital visit is that by now had spent hours talking to fellow long haulers about their neurological issues. She was pretty sure that these were covered symptoms and she tried to tell the hospital staff what she'd learned. I was like, hey, did you know that covid affects people in the brain?

And he was like, Well, I've been treating people with covid for the past couple of months, but I've never I've never treated anybody that had neurological symptoms. I say, well, hey, meet me. And he was like, well, you tested negative for the virus. And I say, well, you do know about false negative tests, right? The doctor told me I was aggressive because I was challenging his his knowledge of research on covid and how it affects people neurologically.

While she was in hospital, she reached out to her primary care doctor to tell him what was going on, hoping that a clinician that knew her would be more sympathetic.

I was looking for him to say, OK, wow, what was the problem? What could it be? And I still didn't get from him what I what I was looking for. I had gotten tired of feeling very gastly and dismissed by doctors. I was tired, but I just I couldn't take it anymore.

Shamir felt like she was out of options. So she decided to write a review of her experience with her primary care doctor. This is what she wrote.

I came to him because I had grown tired of being gassed by medical professionals about ongoing covid symptoms, and he did what others have done, didn't take my symptoms seriously. Sadly, many people are suffering from this virus who do not test positive for antibodies or any PCR tests. This doctors lack of care and professionalism aid in the confusion surrounding the treatment of this virus. While I didn't expect him to know everything, I did expect more compassion and to be believed from him.

I received neither. I will not be returning to his practice and I hope that he treats future covid patients better than he did me.

And, you know, most of the time you sort of send these reviews out into the void. And Schmeer was just pushing out a message in a bottle in the hopes that it might help someone else. But then a few weeks later, her primary care doctor reached out to her. He'd read her review.

He said, Hey, Miss Smith, I would love to see you in the office. I like to follow up with you. And I told him, I said, you know what? I would love to follow up with you. I said, but here's the caveat. I need to be talking to a doctor who understands and has treated covid patients before, who understands that everything cannot be determined by a test because this virus is so novel and so new that pretty much a lot of things that we're trying to test are not showing up.

And it was a great visit. I finally felt like he was a partner. We were partners in my care. At the end of the visit, the doctor officially diagnosed Schmeer with post covid syndrome.

And it makes me emotional because it took me almost six months to get that. I've been fighting for that for almost six months. You know, I had to push a little bit to get to get what I wanted and to get treatment and help for myself. And I think anybody should do that. I don't think that anybody should be afraid of that going forward.

Research shows that women and people of color are less likely to be believed when they say that they're in pain. One study from 2019 found that black patients were 40 percent less likely to be given pain medication for acute pain than white patients. Black women like shabbier already have to battle bias and discrimination when accessing medical care, and that's before you throw in a complicated brand new disease that nobody understands.

There has to be a better way that we get information out to people of color about this virus. And I'm afraid I'm afraid about the history books and what the history books will say about this virus.

It's not just doctors who rely on positive tests and hard data to tell them what to think. Human beings generally don't like ambiguity. We look for clear definitions and black and white answers. We don't like symptoms we can't categorize or syndromes we can't name. But with covid, there's still so much we don't understand and so many things we can't solve again.

The same has to be listened to. People's lived experience, be patient centered, be symptom centric.

It's been almost nine months. Shamir got sick. Recently, she had surgery to fix her vision, but she still suffers from brain fog, muscle weakness and memory issues. She still hasn't been able to go back to work.

I thought I had broken my heart the first time on the 30th of March. But then I ended up breaking my heart again when I had to tell them, hey, I got to take more time off.

And I broke recently, broke my heart again when I had to say that I couldn't start my six year.

With them recently, she filed for short term disability, and that's and that's the reason why having a covid diagnosis is so important. It was so important to me because I needed people to to be able to approve my disability, you know, and I want to be able to have some of these medical bills going forward to be taken care of because they're getting outrageous. Even though she's not back in the classroom with her students, she's still teaching just kind of in a different way.

Back in the spring, members of the support group believed Shamir when no one else did that helped her believe in herself and to ultimately advocate for the care that she needed. Now she's helping others to do the same. Two days ago in the body politic group, there was a fellow group member who was struggling with how to talk to her doctor about her issues with them. And another group member said, hey, you know, reach out to, you know, my user name because she's done it already.

And I was like, wow, I'm honored because I do I show my fellow group members what I've done because I want them to be empowered to do the same.

Shamir and her peers are also teaching the world about the very nature of this new disease.

Like in August, the leaders of the body politic, that group spoke to the World Health Organization and the patient led research group is currently working on an even more comprehensive survey, this time sponsored by University College London. Finally, people are listening. We are the change agents with this virus. You know, we are the history makers here. This episode was reported by Anna Silman, production by Alison Barrenger, our lead producer is by Parker, Fact Checking by Kathryn Varner, voice acting talent from Vivien Legare, Vincent Olá, Chemical Dasuki, Abigail Cheal and our own Alison Barrenger, mixed and scored by Brandon McFarland, who also made our theme music special.

Thanks to Corrine's A Cadenas Sensitising Kurts, Fiona Loewenstein and Athena Akrami. Zellerbach be in the shot. Kawa are the executive producers. The cut is made possible by the team at New York Magazine. Subscribe today to support their work at the cut dotcom slash subscribe. I'm every trawlermen. Thanks for listening.