- COVID-19 “long-haulers” are people who experience persistent symptoms—often beyond respiratory issues—weeks and months after contracting the virus.
- Female long-haulers say their symptoms are being written off as psychological by doctors.
- Without a proper diagnosis, women struggle to get the treatment they need.
The first thing Lauren Nichols sees when she wakes up in the morning is the blur of her desk fan, TV, and bedroom door as they blend together. As her bedroom furniture seemingly spins around her, she says all she can do is focus on taking slow, measured breaths until her nausea and vertigo subside enough for her to place her feet on solid ground and start her day. This usually takes about three hours.
It’s been happening for 144 days. She says doctors didn’t take her seriously until three weeks ago.
Debilitating nausea is just one of many symptoms that Nichols has been exhibiting since she contracted COVID-19 in March. A 32-year-old program manager for the U.S. Department of Transportation, Nichols tells Get Meds Info that she was healthy and fit before the pandemic. Her story mirrors those of thousands of COVID-19 long-haulers who are suffering from strange, persistent symptoms despite recovering from—or at least testing negative for—the SARS-CoV-2 virus behind COVID-19. Within that demographic is a subset of women who say doctors are dismissing these long-term complications, instead grouping their symptoms together as physical manifestations of something psychological.
“I have been gaslit by so many doctors, especially when it comes to my GI symptoms,” she says. “A lot of them would say, ‘Oh, it must have been something you ate,’ or ‘It must have been stress,’ and I’d respond, ‘First of all, I’m not eating anything, and second of all, I’m not stressed or anxious.’”
Nichols is an administrator of Body Politic, a Slack-based COVID-19 support group, where many women with chronic symptoms report similar stories of being brushed off by doctors.
“A lot of the female long-haulers in my group have had medical practitioners write their symptoms off as stress before really talking to them and hearing what’s going on,” Nichols says.
Women Face Specific Challenges When Receiving Care
Clinical psychologist Jaime Zuckerman, PsyD, a psychologist based in Ardmore, Pennsylvania who specializes in the psychological symptoms associated with clinical illnesses, says that at its core, this issue goes beyond the novelty of SARS-CoV-2 and highlights the implicit biases that women face when it comes to receiving adequate medical care.
Jaime Zuckerman, PsyD
Women’s symptoms of pain and discomfort are often explained away as secondary to anxiety or stress.
“Women’s symptoms are more likely to be dismissed as not as severe as men’s, particularly when it pertains to physical pain,” Zuckerman tells Get Meds Info. “When looking at this disparity from the standpoint of longstanding stereotypical roles within society, men continue to be viewed as the ‘stronger’ sex, and are assumed to be able to withstand more pain and likely to only ask for help if absolutely necessary.”
Zuckerman explains that because of this, doctors take men more seriously than women—a phenomenon that impacts the rate at which women are considered candidates for surgical procedures and other treatments.
“Women’s symptoms of pain and discomfort are often explained away as secondary to anxiety or stress,” she says. “It’s not uncommon for women to have longer wait times to receive a proper diagnosis or get referrals to necessary specialists.”
Donna Vnenchak, 53, has experienced this discrepancy directly. She tells Get Meds Info that she and her husband both contracted COVID-19 in March, and while he recovered fully, she still experiences debilitating breathing difficulties. A recent CT scan shows this could be due to ground glass opacities and scarring in her lungs. When she went to a pulmonologist and told him about her symptoms, she says he brushed them off and wouldn’t acknowledge the CT scan.
“He told me it was all anxiety-related,” she says. “He told me to just think positively—that if you are pursuing symptoms and pursuing something wrong with you, you’re going to manifest something wrong with you.”
Vnenchak believes if her husband had made an appointment for the same symptoms, the doctor would have listened, looked at the scan, and given him a proper diagnosis. Instead, Vnenchak was dismissed with a referral to see a psychiatrist, despite the fact that she already sees one. When she discussed the doctor’s analysis with her psychiatrist, she was told her physical symptoms were not rooted in anxiety, and to try to find a different pulmonologist.
“I understand that these doctors have people who come to them all the time claiming to have symptoms and feeling like they’re dying when there’s nothing actually wrong with them, so I get the point of being a little jaded here and there,” she says. “But if I have a CT scan proving there is scarring on my lungs, why on earth would you dismiss that?”
Donna Vnenchak, COVID-19 Patient
If I have a CT scan proving there is scarring on my lungs, why on earth would you dismiss that?
Mismanaged Treatment Has Major Effects
As a psychologist, Zuckerman has heard dozens of stories like Vnenchak’s. She says many patients are referred to her by general practitioners, rheumatologists or pulmonologists for somatic symptoms blamed on the mind. She says this can be an extremely invalidating experience for women.
“Such an experience can quickly trigger feelings of self-doubt by which a woman starts to question her own interpretations of her physical symptoms,” Zuckerman says. “This can lead to an overall withholding of vital medical information for fear of being judged and viewed as ‘crazy.’ It also perpetuates a deep mistrust of the medical community, including doctors, medications, and hospital care.”
With her own patients, Zuckerman works on validating their emotions. She sometimes refers them to different doctors for second opinions and connects them with women who have had similar experiences.
Zuckerman also teaches communication and behavioral strategies to help women better convey their symptoms and concerns, including:
- Being more direct
- Asking for repeated explanations
- Writing down what you want to say prior to the appointment
- Taking notes during the appointment
- Bringing a friend or spouse to the appointment
- Using certain key words and phrases to articulate concerns
Barriers to Treatment Extend Beyond Gender
According to Nichols, many COVID-19 long-haulers weren’t admitted to hospitals when they first contracted the virus and had to nurse their symptoms at home. Part of their challenge involves changing the narrative about what COVID-19 recovery looks like, and trying to highlight the fact that chronic cases exist.
“It’s taken so much work and time for people to slowly begin to acknowledge that COVID-19 recovery is not linear; it’s not like the flu, it’s not two to four weeks of symptoms,” she says. “So many people think you survive that initial attack and then you are recovered. But that doesn’t mean we are recovered, it means we are in the process of recovery.”
These long-haulers may also be limited by the lack of an official positive COVID-19 test to begin with.
“Despite the fact that COVID-19 diagnostic tests still lack reliability and can be difficult to access, many insurers refuse to cover ER visits, lab work, and imaging in the absence of a positive swab,” Lisa Thomas, another administer of the Body Politic Slack group, said in an August 18 newsletter. “Doctors are often unwilling to treat patients who didn’t test positive for the virus, and patients also face disbelief from employers and friends.”
Cinzia Carlo, 50, is one such patient. Despite displaying typical COVID-19 symptoms in March—shortness of breath, body aches, and fatigue—her diagnostic PCR test was negative. Since then, her symptoms have evolved to chronic diarrhea, dysautonomia, nerve pain, and circulatory issues. She says in the absence of a formal diagnosis and in the place of medication, she’s been told on multiple occasions to seek out a therapist.
Cinzia Carlo, COVID-19 Patient
Doctors failed me. Seven weeks ago, I closed the door on doctors.
On one occasion, she says upon forcing herself to get out of bed to see a gastroenterologist, her diarrhea took over. She spent two hours camped out in the office’s bathroom. When she finally came out—embarrassed, in pain, and with traces of feces dotting her clothes—her doctor said he couldn’t help her because she never had COVID-19 to begin with.
When recounting her experiences to her general practitioner, she was emailed a PDF of yoga stretches.
“Doctors failed me. Seven weeks ago, I closed the door on doctors,” Carlo tells Get Meds Info. “I just said, ‘That’s it, I’m done,’ because not only was I not getting help, but they were just causing more problems for me. I know everyone wants to applaud doctors right now, and I agree that the ones risking their lives in hospitals treating active infections deserve applause. But the doctors I’ve seen? I’m not applauding anyone because I haven’t seen anything.”
Long-Haul COVID Doctor Discussion Guide
Get our printable guide for your next doctor’s appointment to help you ask the right questions.
Delayed Action Alters Lives
Megan DuLaney, a long-hauler in her 30s, has worked in the healthcare field for 16 years. She says that while she understands that the medical community is overwhelmed and that many doctors are doing their best, there has to be more curiosity and initiative when it comes to treating long-haul patients.
“There has to be less reliance on the idea of ‘this is how it was, so this is how it will be,'” she tells Get Meds Info. “This is a new illness and we don’t have all the answers. We have the brainpower and the technology to help us get those answers, but we need people to do the work.”
Nichols agrees. Based on the thousands of long-haulers in her support group, this isn’t an issue that’s going away anytime soon.
“None of us know what the future will hold for us anymore,” she says. “COVID-19 is still changing our bodies even months after our diagnosis. We are scared, and we are not making these symptoms up. We need doctors to believe us, because all of our lives have changed tremendously.”
Nichols hasn’t left her house in months, and describes her bedroom as her “prison cell.” Due to another symptom, short-term memory loss, she keeps a notepad with her at all times to keep track of important information that she knows she will forget the following day. She’s scheduled to take a dementia test later this month. For context, the average age of dementia onset is 83 years old, with early-onset occurring at age 65.
Nichols turns 33 in January.
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