Women face struggles as patients with Covid-19 — and beyond

Women’s health is about far more than reproductive health.

That was true long before the coronavirus pandemic struck, says Maya Dusenbery, author of “Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.”

Women already face many inequities in the health care system, documented in Dusenbery’s 2017 book, including dismissal of symptoms and lack of gender-based research. During the pandemic, those same inequities may be exacerbating women’s treatment.

A chronic lack of Covid-19 testing in the United States makes it harder for women to prove their symptoms are real, and long-standing biases about women and hysteria can leave women at a loss when trying to explain the disease’s “long-haul” symptoms.

Here, Dusenbery explains how the current global crisis exposes how gender weighs on the health care system. This interview has been edited for length and clarity.

CNN: Why is gender-specific medicine important?

Maya Dusenbery: Men and women tend to have somewhat different experiences of health and disease, due to both gender and sex differences. There are differences between men and women prevalent in many conditions, as well as in symptoms and risk factors for the same disease. For example, rather than having the “textbook” symptoms of a heart attack, women tend to have more “atypical” symptoms, like fatigue and jaw pain. There are differences in the side effects and effectiveness of treatments and in the accuracy of diagnostic tests.

In order for women — and men — to receive the best medical care, it’s important for health care providers and researchers to be aware of these differences. Unfortunately, until the early 1990s, medical research was largely focused on men, so we are still playing catch-up in understanding women’s health.

CNN: How might systemic bias appear during a doctor’s appointment?

Dusenbery: Women face two big systemic problems in the medical system. First, there’s a relative lack of knowledge about women’s conditions, symptoms and bodies. Second, there’s a tendency to dismiss women’s unexplained symptoms — to normalize, minimize or attribute them to psychological causes. I call these “the knowledge gap” and “the trust gap,” and they manifest in various gender disparities in treatment, research and diagnosis.

For the average woman, the gender bias in medicine means that she may be prescribed a drug that causes unrecognized side effects because it was primarily studied in men. It means that she’s more likely to have a poorly understood condition, one that disproportionately affects women and has been neglected by researchers. It means that she’s likely to face a longer diagnostic delay compared to her male counterpart, especially for rare or difficult-to-diagnose diseases, because health care providers are quicker to conclude that her mysterious symptoms are “just stress” instead of doing a more thorough workup.

CNN: For years, “hysteria” was once a catchall women’s diagnosis for many medical conditions. Have we moved beyond that thinking?

Dusenbery: Medicine has not moved past that thinking to a really alarming degree. In recent decades, unexplained symptoms that previous generations would have called “hysteria” have just gotten new labels: terms like psychogenic, functional or “medically unexplained symptoms.”

By and large, medicine has held onto the idea that any physical symptoms that cannot currently be explained physiologically can, by default, be attributed to the psyche. This idea is dangerous for all patients, and it continues to particularly harm women, who frequently encounter health care providers who say or imply that their symptoms are “all in their heads.”

CNN: Many Covid-19 patients have reported persistent symptoms months after infection. Are “long hauler” women likely to be treated worse than men?

Dusenbery: I do (think so). While we’re still in the early stages of collecting solid data, I would be very surprised if we don’t see some gender disparities in long haulers’ experiences within the medical system. This is not to say that male long haulers have been treated well. Early in the pandemic, the narrative was established that most Covid patients would recover in two weeks. Consequently, many long haulers, regardless of gender, have faced skepticism from health care providers convinced that their lingering symptoms couldn’t be related to Covid. Hopefully, as long haulers have gotten media coverage over the last few months, that’s starting to change.

Medicine’s long history of viewing women as especially prone to psychogenic symptoms (illnesses without a clear biomarker that are believed to have arisen from emotional stressors), which means that when a woman is reporting symptoms that aren’t readily explained, doctors are more quick to blame anxiety or depression or stress. With a man, they may at least run more tests before reaching that conclusion.

CNN: How have test shortages made it harder for women with Covid-19 to be diagnosed and believed?

Dusenbery: It’s certainly a huge problem that long haulers — especially those who got sick early in the pandemic — are facing now. Those who don’t have a positive test — whether because they weren’t able to get tested at all or weren’t tested until later in their illness, when there’s a high likelihood of getting a false negative — have encountered health care providers who don’t believe that they ever had Covid at all. That includes even those who had been diagnosed clinically based on their symptoms early on. A negative result does not necessarily mean you didn’t have Covid, and yet patients are reporting being denied care on this basis.

Especially when facing a shortage, a doctor runs a test when they suspect it will be positive — meaning they must already believe the patient’s report that their symptoms are severe and abnormal enough to warrant testing. For many women, that’s a battle.

I spoke to one long hauler who called her primary care doctor when she first developed a fever and began struggling to breathe. He suggested she was having an anxiety attack and that she just needed “a nap and to stay off the news.” She did manage to get a Covid test — which was positive — but only after calling her doctor’s office back four times to demand one. He later told her he just “didn’t think it was that bad.”

CNN: If a woman thinks her doctor is biased, what can she do to receive the care she needs?

Dusenbery: It can be really hard. It’s easy to say you should “advocate for yourself” by insisting that something is truly wrong and demanding the care you need. But you also don’t want to come across as a “difficult” patient, since that can easily backfire. Women often have to walk a tricky tightrope, fighting to be taken seriously while still playing the role of a “good” patient. Other biases can also affect how much leeway you have to be assertive. For example, I spoke to another long hauler who felt that, as a Black woman, she received the worst treatment by health care providers when she pushed back against their dismissals. She got the most help when she acted more “demure.”

That said, my main advice would be to describe your symptoms in the most concrete terms possible — for example, if you’re experiencing fatigue, don’t just say you feel tired; describe how the fatigue makes it impossible to do X or Y daily tasks. Emphasize that the symptoms are new and different from any preexisting symptoms you may have. Be skeptical of a psychological explanation for disabling physical symptoms, especially from a health care provider who isn’t a mental health professional — and definitely don’t let it get written down in your chart.

In the past, many women have told me that bringing someone along to their appointments — especially a male partner or family member — to help corroborate their symptoms was a tactic that helped. But with the current restrictions on having visitors, that’s often not an option these days.

Above all, if you feel like you’re not being taken seriously, if you can, seek out another health care provider until you find one who listens and is willing to work with you to get to the bottom of your symptoms.

CNN: How has social media changed women’s ability to advocate for their diseases and seek out adequate care?

Dusenbery: Social media — and the internet in general — has been a game changer for women with a range of diseases — and especially for women with conditions that have been under-studied and marginalized within medicine. Online patient communities are not only a vital source of practical information and emotional support, they have been instrumental in funding research and garnering greater media attention for many female-predominant conditions, including (myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome), endometriosis, vulvodynia and others. In this current pandemic, we’ve seen the rapid formation of Covid support groups, which have been extremely effective in gathering data about the experiences of long haulers and pushing the media and public health institutions to start paying attention to it.

CNN: What opportunities do you see to use the pandemic to help build a more equitable health system?

Dusenbery: This pandemic has exposed so many existing societal problems — including problems in our medical system. The story of long-haul Covid, in particular, has spotlighted medicine’s neglect of post-infectious chronic syndromes, its overreliance on imperfect diagnostic tests, and, above all, its tendency to dismiss or psychologize instead of simply sitting with uncertainty and saying “We don’t know yet.”

These are problems that many patients — especially women of color have long been very familiar with. As we learn more about the experiences of Covid patients, I hope we recognize that many of the problems that they are facing are not unique to this global pandemic but are in fact endemic in the medical system even in the best of times.

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