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And many patients believe their symptoms aren’t being taken seriously.
In June 2020, Hannah (who wants to be identified only by her first name) was standing outside of her family home with her dad when he told her to stand still. He snapped a picture of the back of her head—there were bald patches everywhere. “I had a mini panic attack,” she tells me over Zoom. “I was like, ‘Oh my god, I’m literally going bald.’”
Hannah believes that she contracted COVID-19 in March 2020 (she doesn’t have a positive test to prove it because testing wasn’t widely available at the time); she’s one of the 30 million people who’ve been diagnosed with the virus in the U.S. She’s also a member of another group—experts call them the COVID-19 long-haulers. These are the people who are still dealing with COVID-19 symptoms months after they’ve tested negative for the virus. Think: shortness of breath, head-splitting migraines, a prolonged loss of their sense of taste and smell. They’re still kind of a mystery—experts don’t know why they’re still dealing with symptoms or how to put those symptoms to an end.
Breauna O’Shea, a 19-year-old from Chesapeake, Virginia, and one of the nine long-haulers I interviewed for this piece, describes days when she could barely get out of bed because she was so exhausted and nights when she would sob for hours because of nausea and pain. Her headaches can get so intense that her room needs to be pitch-black; even the light from her phone can cause sharp jolts of pain. When she brushes her hair, chunks fall to the ground. Before the pandemic, Breauna tells me she’d been in two bad car wrecks. “I’d rather get in another car accident than deal with the symptoms I have now.”
Excessive hair loss is one of these long-term COVID-19 symptoms, but in articles and scientific studies about long-haulers, it’s rarely mentioned. In fact, all the women I spoke with found out about the connection between hair loss and COVID-19 either through long-hauler support groups on Facebook or through me when I reached out for an interview request. Aside from their symptoms, these women also have another thing in common: They feel like their hair loss hasn’t been taken seriously by people around them, including doctors.
The medical community isn’t one hundred percent sure there’s a single reason behind hair loss in COVID-19 long-haulers. It could be caused by the intense stress your body goes through when it’s fighting the virus or by the emotional, mental, and physical stress of dealing with COVID-19 symptoms or trying to stay afloat during a pandemic. A recent study shows that there was a 400 percent spike this past summer in COVID-19-related hair loss in a racially diverse neighborhood in NYC. “It is unclear if the increase in cases is more closely related to the physiological toll of infection or extreme emotional stress,” said one of the study’s coauthors.
And even though COVID-19 is technically a respiratory virus, it can impact many organs. For example, if COVID-19 negatively impacts your thyroid, it can also create a hormonal imbalance that triggers excessive hair loss.
We have four phases in our hair cycle, says Kendra Timmons, a board-certified trichologist based in Arlington, Texas. “There’s a growing phase, a transitional phase, a resting phase, and then your hair naturally sheds out of the follicle,” she explains. Our cortisol levels spike when our bodies are extremely stressed out, causing a hormonal imbalance that can push hair strands out of the growing phase and, eventually, into the resting phase way faster than normal. Doctors call this type of hair loss telogen effluvium (“telogen” is another word for the resting phase), or TE.
Normally, the average healthy human has 10 percent of all their hairs in the resting phase, and they shed those hairs about every three months. “When you’re experiencing stress-related hair loss and your hairs are being pushed prematurely into the resting phase, you could lose up to 50 percent or 70 percent of your hair at a time, instead of the typical 10 percent,” says Timmons. For most people, the hair loss isn’t permanent, but the excessive shedding can last around six to nine months before it stops.
There’s no research on what percentage of COVID-19 survivors deal with hair loss—usually, signs of TE begin three months after a stressful event occurs, making it difficult for researchers to see the link to COVID-19. According to a recent study, though, 22 percent of hospitalized COVID-19 patients in China reported hair loss six months later. And whether you experienced mild COVID-19 symptoms or dealt with more intense ones, the severity of the actual illness doesn’t seem to really matter when it comes to stress-related hair loss. In fact, according to researchers, a large chunk of COVID-19 long-haulers are “young, previously healthy adults” who weren’t hospitalized for the virus.
The range of experiences was on display among the people I spoke with: Mya Geans, a 20-year-old from Phoenix, was in the hospital for days after her oxygen levels dropped dangerously low; she developed double pneumonia in both her lungs. Monica, a 28-year-old from New Jersey, dealt with body aches, she was tired all the time, and she lost her sense of smell and taste, but those initial symptoms lasted only 14 days and she was never hospitalized. Yet both Mya and Monica are dealing with COVID-19-related hair loss.
Catrina*, a 32-year-old from New Jersey, says she’s frustrated that COVID-19-related hair loss isn’t talked about more. When she started noticing clumps in the shower, she was terrified—and also felt a bit ashamed. “For me, losing my hair was really devastating,” she says. “And there was nothing I could really do about it. I felt embarrassed.”
Nicole, a 31-year-old from Austin, Texas, thought she was out of her mind because no one was taking her seriously. “I would tell people that my hair’s falling out, and they would say something like, ‘Oh, hair loss is normal, we lose 500 hairs a day,’ but what I was dealing with was not normal,” she tells me. “I felt like I was going crazy.”
After her dad took the picture of her bald spots, Hannah says she felt like she was being gaslit by her doctors. She did her own research, but whenever she would bring up the tie between COVID-19 and hair loss, she says she was shut down. “They would denounce it and say things like, ‘I don’t really know if that’s the case’ or ‘I’ve never heard of that.’”
Hannah began to second-guess herself and her symptoms—she’d snap iPhone pictures of the hairs that would shed on her pillow and in her shower drain, zoom in on the image, and try to count the individual hair strands to see if she was actually losing an abnormal amount or if she was just imagining it. “It led to a lot of insecurity whenever I would go see a doctor,” Hannah said. “I would go into their office on edge, like I needed to defend my own experiences.” When a dermatologist finally gave Hannah a TE diagnosis, a wave of relief washed over her. “Even if there isn’t a cure, it was so affirming to have someone else confirm that I wasn’t making this up in my head.”
Both Kristen Barber, PhD, associate professor of sociology at Southern Illinois University at Carbondale, and Jessica Gold, MD, assistant professor in the department of psychiatry at Washington University in St. Louis, say there are two likely reasons why hair loss might be dismissed or seen as “unimportant” compared to other long-hauler symptoms: the idea that hair loss is “less permanent” and the fact that some people believe worrying about hair is “superficial.’” Here, they break down both schools of thought:
During a post-COVID-19 checkup, doctors are usually looking for chest pain or breathing issues—if hair loss does happen to make the checklist, it’s not a top priority. “There’s a thought that if you cut your hair, it’ll eventually grow back—and anything that feels less permanent might feel less serious, even if that’s not the case,” says Dr. Gold.
“I think that the way we see ‘seriousness’ is shaped by sexism,” adds Dr. Barber. By dismissing hair loss, you’re also ignoring the cultural importance of hair. “I mean, if I personally had to choose between hair loss and the degradation of my lungs, I would choose hair loss,” says Dr. Barber. “But it would still have a huge impact on my life, how I moved about the world, how I experience my everyday life.”
And then there’s the whole vanity thing. “If you don’t view people’s appearance as central to their well-being and self-esteem, you’re more likely to say things like, ‘Whatever, it doesn’t matter, it’s just hair’ or ‘Oh, you’re so obsessed with what you look like,’” says Dr. Gold. But dealing with hair loss can lead to even more mental stress. “You can start to feel anxious that you don’t fit in, or it can make you feel traumatized to have people look at you a certain way,” she says. “And if you already felt damaged from something that you were dealing with pre-COVID-19, the hair loss just increases those negative feelings.” It’s ironic—women are supposed to be concerned about looking a certain way, but in certain public spaces, they’re not able to talk about appearance without being called vapid.
Hong Danh Ngo, MD, board-certified physician at national telemedicine primary care practice Eden Health, believes that doctors aren’t dismissing COVID-19-related hair loss on purpose. Doctors are trained to be patient-centric, he says, but they’re often limited by time, environment, and resources in the real world. “With the spike in cases, physicians or providers may not have enough time to really address these issues,” says Dr. Ngo.
However, there’s a long history of women—especially women of color—being intimidated, dismissed, and judged in medical settings. And when you’re used to having bad experiences with doctors or not being believed, that can make it less likely for someone to seek care. “You have to wonder if we’re ignoring or marginalizing symptoms—how is this related to the ongoing marginalization, misdiagnosis, and underdiagnosis of women in health care?” says Dr. Barber.
When I started reporting for this story in December, I reached out to several women in the COVID-19 long-hauler support groups and noticed a trend: All of them were white. I cast a wider net for my interviewees because of this, and I found a more diverse group of women outside of these Facebook communities. When I asked Dr. Barber why she thinks these groups are so white even though reports show that communities of color have been hit harder by the virus, she points out that discussions around hair are racialized.
“If you’re talking about women who chemically straighten their hair or experience loss or breakage more regularly, it might be talked about in a different way,” she says. “Because of the way hair is racially politicized, I’d expect that Black women would be talking about hair in a different way than white women.”
What comes next?
Unfortunately, a lot of the recommendations for managing TE aren’t an option for those most impacted by the virus. “With TE, there’s not really a ton you can do. You can exercise, eat more greens, but it’s really a waiting game,” says Timmons. “You have to lower your stress levels in order to see some results.”
Mya’s excessive hair loss eventually came to an end earlier this year. In late December, Nicole received test results that revealed her thyroid wasn’t functioning properly, and after her doctor gave her a prescription to manage the thyroid issue, her hair cycle returned to normal.
Everyone else I spoke with is still playing the waiting game. Rachel, a 25-year-old from Elgin, Illinois, says it’s hard for her to stay calm even though she knows that stressing about her hair loss will only make it worse. “I’m getting married in October and I’ve been really trying to take care of my hair and my skin because it’s a big day. It’s documented forever,” she says. “But I’m just terrified. I want to look and feel my absolute best, and this is prohibiting that.”
Dr. Ngo advocates that people establish a relationship with a counselor or a therapist, although he realizes this isn’t a possibility for everyone. Itati Lopez, a 26-year-old from Chicago, says she’d love to go to therapy but her insurance doesn’t cover it. “It’s either I tell someone my problems and figure that out, or I eat dinner this week.”
When I asked Dr. Gold what steps people could take to navigate the system and receive care, she said that while it’s not always easy and that the medical system is fractured, it’s important to keep fighting for yourself. “If there’s a doctor who’s dismissive of you, that’s on them. And if you can find another doctor, I’d urge you to keep trying.”
If you think you might be dealing with TE, Timmons recommends booking an appointment with a dermatologist ASAP, if you’re able to. The American Academy of Dermatology and the Skin of Color Society lets you search by zip code to locate credentialed doctors in your area—they can help you get to the root cause of your hair loss. And in the meantime, Timmons says to consider techniques to manage stress, like meditation or yoga, as well as eating well and getting a good night’s rest when you can.
There are also government resources and mutual aid groups that can help you out if you’re having trouble affording and accessing healthy food. While most hair supplements don’t have the science to back up their claims, taking a multivitamin that contains iron and vitamin D can help out with hair loss in the long run. Don’t be afraid to seek support where you can—whether it’s joining a long-hauler support group online or hitting up one of the hotlines listed at the bottom of this piece. And if your insurance doesn’t cover therapy, look into community-based health centers that offer free mental health services.
“I hate to think that someone’s dealing with hair loss and thinking that it’s stupid because other people may have it worse. We play a grief comparison game all the time, a ‘whose life is worse’ game,” says Dr. Gold. “It’s really important for people to keep in mind that if you feel sad, if you feel angry, if you feel anxious, your feelings are always valid. And you’re always allowed to get help for them.”
*Name has been changed.
If you or anyone you know is anxious, depressed, or needs to talk, there are people who can help: