Why Women Physicians

are Flipping the Story on Health Care for Patients with Long Covid and ME/CFS

The patriarchy is no joke. It’s easy to joke about the patriarchy though—it’s how women, particularly those who have climbed the steps of power—make it through the day. I have spent the past several weeks interviewing women physicians who have demonstrated the deepest empathy, understanding, and clarity for what good care for people living with complex chronic conditions looks like, despite the many systemic restrictions they face. I wanted to share a few of these insights here.

First, a few things. Most women I spoke to discussed how difficult it is to be a woman in medicine. For instance, Dr. Ali Christy, who is a neurologist and clinical director of pediatric neurology at Providence Health and Services in Oregon, said, “I think in general in society, I get a negative ten for just being a woman. I have to prove myself to be smarter—you come in with a deficit that you have to make up when we walk into a room as a woman. Why that is, I can’t really say. We know as physicians we have to spend more time with patients and get nominated less for awards; we’re always trying to make up that deficit of being trusted less and thought of as lesser.”

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This is even more difficult for patients who deal with constant micro-aggressions in the workplace. Dr. Oni Blackstock, a Black woman physician and leader in health justice, spoke with me about the difficulty she had when she’d reached the level of Assistant Commissioner at the NYC Department of Health and Mental Hygiene. The Health Commissioner at the time, Dr. Mary Bassett, “who was amazing and who had started an agency-wide racial equity internal reform process called ‘Race to Justice’ ” hired Dr. Blackstock to lead the agency’s Bureau of HIV. Dr. Blackstock said, “the initiative brought discussions of racism and its impacts on health outcomes as well as its impact within the Health Department to the forefront. It really flung the doors open for us to talk openly about these issues and to begin to intervene on them which I did within the Bureau I led. But I realize that I’d rather work outside of institutions and go in to support the work within institutions. This is because working in these institutions can be very toxic. Like I said, it was very hard for me to being one of a few Black women in a leadership position in the Health Department. I was constantly being undermined.” 

Yet, it’s even worse for patients. Black women face extraordinary distrust and disbelief when they seek care, particularly when their clinician doesn’t look like them. Dr. Blackstock said, “Why is white women’s fatigue taken seriously but not Black women’s fatigue taken seriously?” In this conversation Dr. Blackstock opened up a whole can of worms I’ve been trying to untangle: why is ME/CFS and Long Covid so commonly reported and amplified for white women (as well as men) while we have evidence that Black and Brown Americans are experiencing the same or worse symptoms? Blackstock explained that it’s being a person or color and being a woman—“it’s a double whammy of not getting care.” This is what many scholars call intersectionality – or the multiple layers that promote injustice first coined and amplified by Kimberlé Crenshaw.

Dr. Blackstock went on to explain how even she—a well-respected physician, often informs a new provider that she is a physician because she simply expects to be treated poorly. This is not an unfounded bias—it is based on years of experience. When she brought this experience to twitter—saying she did this because she wants the doctor to realize, “I know what's going on here, or the way to protect myself,” a huge response flooded in that other Black women-presenting physicians who do the same. She went on, “I think folks from minoritized groups are familiar with not having their concerns taken seriously. And I think typically when there's something vague like chronic fatigue syndrome, things are more unclear. I think that biomedicine is often about things that are like very clear-cut like we have a reason. We can explain why you have this chest pain because you have a clogged artery.”

“I feel like the medical establishment has not had a good handle on ME/CFS,” Blackstock continued. “So much of the progress has been driven by patient activists. I know, just as a provider, if a patient has medically unexplained symptoms, it raises a lot of discomfort in our bodies. And I think what ends up happening is, instead of sitting with that discomfort and being like, “Okay, why am I feeling this? What do I need to do? What do I need to do for myself to be able to provide care to my patient?”, a lot of times what ends up happening is the patients’ symptoms are dismissed by the health care provider. Their concerns are not  heard or addressed—but I think it has to do with the biomedical model. I think when we can't put something into a clear bucket or category, or can't provide some explanation for whatever we're seeing in terms of manifestations, physicians tend to struggle”.

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I spoke to Dr. Jodi Roque about what she was seeing in her clinic. Dr. Roque is a Spanish-speaking family physician who works at a federally qualified health clinic on the Southwest side of Chicago.  She made it clear that it’s not only about biomedicine but, at the end of the day, it’s about money—or the financial arrangements that make it so expensive and difficult to access medical care in America. She told me that every day at work is an absolute scramble. She tries to do the tests the clinic will cover for her patients who are largely uninsured; but providing care in this frantic clinic was both overwhelmingly fast-paced and consistently overbooked with people needing care. She said regarding Long Covid, “Unfortunately, a lot of my patients, even when I might refer them for additional tests, are not able to go. For example, I don’t know if my patients truly have asthma as they cannot go for appropriate pulmonary function testing.”

“But I definitely think for me,” Dr. Roque continued, “fatigue and ongoing shortness of breath were the things that I noticed the most among my patients. Some patients also had ongoing blood pressure issues which were not present before they had COVID. I also had a couple of patients that had severe vascular effects of COVID where they had to have parts of their bowel resected.  They were left with ostomies and we had to figure out getting all the appropriate supplies and work with financial assistance to get their emergency bills covered. Then, we would have to work to get them into other surgeons to reverse their ostomies once their bowel healed and the local county hospital can take six months or even longer to get into so many of them had this huge inconvenience a lot longer than necessary.”

“It's just hard to advocate for specialists for people without insurance,” Dr. Roque said with a sigh and a shake of the head. “We apply for charity care, but it's hard to get and care is often delayed. So, my ability to do additional work-up and testing for uninsured patients with symptoms of long COVID is often pretty limited.  Oftentimes, I do basic labs, try inhalers, help people quit smoking and so on, but there is not a lot that I can do other than just listen to them, believe and support them, and give them time to heal.”

Good Clinical Models for Long Covid

There are some good examples in biomedicine, even though those clinicians look at me with a side eye, suggesting that they’re flipping everything on its head. I spoke to Dr. Alba Azola, a physiatrist at Johns Hopkins University and an assistant professor of medicine. Most of her time is spent serving patients in the Chronic Fatigue Syndrome Clinic (founded by Dr. Peter Rowe), which is for historical and political reasons located in the Department of Pediatrics at JHU Hospital. For years she worked with patients rehabilitating from surgery, traumatic brain injury, critical illness, spinal cord injury, and strokes. In 2020, her department at JHU Hospital was approached by the Pulmonary Department to begin a Post-Covid Clinic. At first, they were working with patients who’d been in the ICU and were recovering from being so critically ill. However, their patient population started to shift from people suffering consequences of their acute illness to become more outpatient care for people presenting with Long Covid, which resembled in many cases ME/CFS. Soon the Pulmonary Department realized that these patients weren’t experiencing pulmonary issues and shifted the focus of the clinic to serve the wider post ICU patient population.

Dr. Azola found extraordinary meaning in this work with Long Covid patients. She reached out to specialist across the hospital system, to learn how to initiate the management of common conditions seen in Long COVID such as dysautonomia, mast cell activation syndrome and ME/CFS.   Eventually she came across a program in the Pediatric Department that was started by Dr. Peter Rowe in the 1990s to care for people with ME/CFS.

Dr. Azola highlighted six key things to think about when you’re caring for someone with Long Covid. First, people need access to care—this is a hurdle not only with health insurance and finding someone to believe you but also simply getting to the doctor can cause extraordinary post-exertional malaise. Second, culturally people are not being educated about Long Covid, which is causing stigma and bias in society that makes people think their symptoms are not real. Third, people are more likely to be dismissed, or not ask for help from a physician, because they do not feel they are being taken seriously or they do not feel safe in medical spaces. Fourth, people are less likely to feel understood or taken seriously, particularly when their background is very different from their physician.  Fifth, cultural competency needs to be understood for explaining symptoms of Long Covid. In this way, not everyone will come to the clinic with the same knowledge and the conversations people can and want to have about their symptoms and underlying causality will differ enormously. I have found that highly educated women find they are dismissed by doctors because they come to the clinical encounter with too much information while people less familiar with what is causing their symptoms may be dismissed because they are perceived to understand too little. Finally, if you don’t have context, then this person coming with a cadre of complex symptoms may sound like a hysterical crazy person. Dr. Alzola laughed when she said this, nodding to me because we both understood too well how the medical establishment perceives many people, particularly women, who present with these conditions to be aligned with the hysterics of generations past.

Before I move on, it’s important to understand how Dr. Azola’s clinic is different to a Long Covid Clinic. Most people I have spoken to are irate about the Long Covid Clinics. This is not because they are a bad idea. It’s because of the way they are structured. Unlike Dr. Azola’s clinic, where she spends time listening to a patient with complex and chronic symptoms that she has been trained and experienced to care for, Long Covid Clinics have primarily been set up to be switch boards. Instead of meeting one clinician who can care full the whole person, Long Covid clinics are set up to help patients manage their specialty care. I have spoken to more people with Long Covid than I can count who have seen more than two dozen doctors. In fact, most Long Haulers’ most difficult activity that they have to save energy for is to see the doctors once or twice a week. This system is not set up for people dealing with the autonomic dysregulation that so many people are managing day in and day out. What people need are holistic healers who can sit, listen, and spend time coming up with plans for navigating a new normal.

Finally, I spoke to Dr. Rebecca Wilson Zingg, an Osteopathic Physical Medicine and Rehabilitation physician, who focuses on whole person, health-focused patient care. She recently moved from the University of Utah to Ashville, North Carolina to join AdventHealth Medical Group. She aims to empower patients and communities with tools for wellness. “Our medicine has been focused on putting out fires, a disease- rather than health- and prevention oriented-approach,” Dr. Zingg said. “Despite our tremendous expenditure on medicine, we continue to progress as one of the least healthy nations in regards to up-trending obesity and associated comorbidities. Education and resources need to shift towards patient empowerment through lifestyle approach. How we eat, how we move, and where we put our attention (with mind-body practices) are the pillars of health. To awaken a patient to the potency of the health within themselves, to guide them along their individualized path of daily choice, is to walk through a doorway of deep fulfillment and joy for both patient and practitioner alike”.

She went on to explain, “Back in the 1800’s and 1900’s, many conventional treatment (such as alcohol, opium, and so on) were worse than the diseases they were targeting. I smiled and thought back to Dr. Ali Christy’s lecture of women in neurology, emphasizing how in the 1800s, while the sophistication of medical technology was not there, there was a focus on healing the whole person that was broken down by the Hopkins Model, where everything became focused on the laboratory and fixing what had been broken.

Dr. Zingg continued, “I was drawn to training as an Osteopathic physician, because from its roots, Andrew Taylor Still, MD, DO (founder of Osteopathic Medicine in the 1800’s) saw this lack in contemporary, medical approach. Rather than remain complacent, he pursued a truly heroic journey into exploring other treatments of the time and eventually discovered the answer to the suffering of the human being within the body itself. Building on his foundation of traditional medical practice, the philosophical and technical approach of Osteopathy was overlain, wherein “pathos” (suffering) is addressed through treating the “osteo” (bone), aka musckuloskeletal issues. Rather than simply treating disease, Still emphasized the central role of the physician in treating the health, appraising the body as a unit, and considering the important relationship between structural integrity and optimal function of all anatomical structures. Furthermore, within Osteopathy, there is focus on the tremendous self-healing, self-regulatory mechanisms always at work within the human being. Through hands-on treatment, the Osteopathic physician helps to remove structural issues limiting optimal function so that the body can function at its best in clearing disease.”

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“We have been imbedded in a medicine strongly driven by pharmaceutical based intervention; however with the COVID pandemic, we were once more face-to-face with the limited capacity of many medications, especially in addressing a novel, viral target. Osteopathic Manipulative Treatment and implementation of techniques to optimize lymphatic clearance, diaphragmatic function, rib and other muskuloskeletal motion, and autonomic balance can be additionally helpful into supporting the patient in their health-driven recovery.”

“Whether considering the complexities of the COVID pandemic and patient management or the overall health of our nation, the demand to shift focus back towards a more health-centered approach seems more and more pressing. Health in mind, body, and spirit – fueled by daily movement, healthy nutrition, social connection, and mind-body approach – are irreplaceable. When there are impediments to the structural integrity of the body that contribute to pain, inability to clear disease, and impairment of the breath itself, the physician can bring tremendous change through use of gentle, hands-on approach to facilitate a path back to optimal health.”

I nodded, scribbling down notes fast and furious. Then, I asked about the gut—so many people have (sometimes shyly, and sometimes not-so-shyly) talked about their immense gut issues, bringing diarrhea and constant tummy pains into conversations. “Whether considering the gut as our primary, immunological interface through which we introduce foreign substances, or as our “second brain” (being enlivened an imbedded with neurotransmitters), the gut is essential to our physical, mental, and emotional health. Processed foods, processed sugars, and processed meats set the stage for a more pro-inflammatory state, whereas a diet rich in a variety of whole, plant-based foods can not only treat and reverse many comorbid disease, but can also decrease ailments such as pain and depression.”

For awhile we talked more about science, then about our children, and about growing into our middle-aged bodies, with changing hormones and social roles as working moms.  We eventually came back to clinical care.

“It's so interesting how we are trained right from the start as clinicians to ask questions in a certain manner, to hone in on a disease and a diagnosis. In many ways, this is important for both the patient to feel heard and seen in their suffering as well as to target treatments in facilitating healing. However, I started to notice that this questioning approach was fundamentally the opposite of what I was considering from a mindfulness perspective. Through mindfulness approach to pain, we give attention initially to areas in which we feel negative sensations and suffering, but then we expand attention to other sensations locally, regionally, and throughout the body as a whole. Through telescoping out, mindfulness provides a powerful tool to decrease pain and return attentional power and capacity to the practitioner. Collaboration with colleagues at the University of Utah (Eric Garland and Adam Hanley) and introduction to MORE (Mindfulness-Oriented Recovery Enhancement) showed me the power of imbedding mindfulness into my clinical flow. It also showed me the need to evolve in how I listen to patients, how I consider not only their presenting complaint but also their strengths and impediments to optimal health. In medicine, we must learn to telescope out and consider the overall fabric of the human being. For, facilitation of health is to not only see the impediments but also to see and embolden the robust health that underlies it all.”

“How do we feed that health? How do we grow that vitality and resilience in the human being?” she asked, as her small tow-head scrambled onto her lap.  “Whether speaking to musculoskeletal pain or recovery from a viral infection, we must first start with the fundamental pillars we discussed in regards to nutrition, rest and therapeutic movement, compassionate hands-on modalities, and psychological support” “I was taught very early on within Osteopathy that the physician is not the fixer. We are facilitators. We are health facilitators in a patient's life to try to liberate them into their best possible vital experience. When I walk into the room, I am the student, and the person's health is my teacher. How can I listen to that teacher? How can I facilitate a process that is right for them--that's therapeutic for them?

“It requires a huge shift from the egotistical idea that we should—and I honestly think this leads to imposter syndrome—the idea that we should always know everything.” I wrote this down in bold in my notes in part because so many clinicians and patients alike have told me that the main reason Long Covid patients feel so dismissed by clinicians is because their clinicians panic because they have no idea what to do. Instead of simply saying, “I don’t know,” they refer them to someone else in the best case, or shut them down by saying it’s “all if your head” in the worst case. “And that space of curiosity and openness and excitement and learning that we can almost recall when we were kids gets diminished as we're supposed to be more and more professional. So, I truly think that putting health at the center, putting vitality at the center, is key.”