POTS:

A Case of Dysautonomia (another oft-hidden diagnosis)

Over the past three years I have been curiously reading hundreds of online message boards where patient communities share information about symptoms, clinical strategies, and recovery strategies. These are message boards where people learn they are not alone, and that there are hundreds of thousands of people with very similar experiences: strange and creeping symptoms that seem unrelated, disappointing clinical engagements where they feel dismissed or misjudged, possible strategies for healing, and narratives on isolation. One shared experience among so many people, however, is dysautonomia. A form of autonomic dysfunction or autonomic failure, this condition reveals when the autonomic nervous system isn’t functioning properly. Dysautonomia can feature in several health conditions, from Parkinson’s Disease and Ehler’s Danlos Syndrome (EDS) to HIV/AIDS, autism, and postural orthostatic tachycardia syndrome (POTS), ME/CFS, and Long Covid. One theory is that a virus, bacteria, or other interferant disrupts the vagal nerves, causing ANS dysfunction and the multiple symptoms to unravel.

Photo by Benjamin White on Unsplash

For centuries people have experienced the flagship symptom of dysautonomia, which may develop from genetics, environments, or infections, although it is sidelined in the public conscious of what it means to be sick. This is in part because dysautonomia can be overlooked or overshadowed by other conditions because there is no clear biological test to diagnose it. Dysautonomia causes the autonomic nervous system to fail to regulate the brain, heart, blood, and gut and (although it manifests differently between people) produces common symptoms like heart palpitations, memory inconsistency, sensitivity to sound and light, dizziness and problems with balance, low blood sugar, sweating, diarrhea, chest pain, migraines, and mood swings. These symptoms are common among complex chronic health conditions; in fact, two people diagnosed with different conditions may present more similarly than others diagnosed with the same condition. This is because health conditions are inherently shaped by personality quirks, cultural beliefs about health and the body, social dynamics with family, friends, and work, as well as previous experiences with health conditions (that may have cleared up or persist). They are also often moderated by structural factors that affect financial security and the reliability of good health care that people trust will or can help them.

One common form of dysautonomia, which has crept into the lives of many people living with Long Covid is POTS. POTS specifically is an articulation of the condition when you cannot transition easily from lying down to standing up. When doing this task most of us never think about, people with POTS experience a fast heart rate, dizziness, and fatigue. There is no cure but several ways to moderate symptoms. This is because when you have POTS, your body cannot keep your blood pressure steady and stable. But very rarely do two people with POTS have the same experience, and often POTS is a cross-linked condition with other diagnoses. Let me share one person’s story living with POTS (although most people living with Long Covid are all too familiar with it).

Ja’Mia’s Story

Ja’Mia Hewitt’s mom was doing her hair when she fell forward and passed out. She was eight, and they didn’t think much more of it. A fluke. But that was her first episode. Once she got her period, her dizziness intensified every month. In high school she tried out for the basketball team and in the middle of her tryout everything went black. She fell backwards and smacked her head on the floor. Her parents took her out of sports and assumed it was anemia. The next year she tried to work at a local hotel for extra money but she’d pass out while standing on her feet for long periods of time and couldn’t keep up—she was much too fatigued. Everyone told her to drink coffee but coffee laid her out, too. As a senior, Ja’Mia landed in the nurse’s station and everyone assumed she was pregnant. She was in high school and felt embarrassed, ashamed, and confused.

This continued for years—she’d pass out, wake up, and not understand her triggers. At 19, her doctor was searching for explanations, and Ja’Mia was exasperated. They decided to test her for POTS, or postural orthostatic tachycardia syndrome. POTS is a disorder that makes people feel faint or dizzy, which happens when the autonomic nervous system doesn’t work as it should. This makes your heart race, blood pressure spike, and breathing labored. It’s extremely common among people living with Long Covid and myalgic encephalomyelitis. They gave her the Tilt Table Test, where you lie on a table hooked up to machines to monitor your heart and blood pressure. They see if your blood pressure and heart rates respond to different positions, as you move immediately from laying down to sitting or standing. Her blood pressure raced and she passed out. Many people with POTS have blood pooling in the lower extremities and the heart starts working overdrive. Yet, Ja’Mia explained, “I called my provider to ask how it was, and she said, ‘Oh, everything was fine.’ And I said, ‘Well, I passed out on the table. So how was everything fine?’ […] I'm like, all right. Everything is fine. I'm 19. What do I do?”

Ja’Mia was frustrated. This frustration led her to study nursing, working her way up from a CNA to a masters in health administration. She said, “I’m like, enough is enough. I’m going to do whatever I can do to help ensure other people don’t have to deal with what I’m dealing with and navigating this health care system is like pulling teeth. It’s insane in the US how awful our health care system is, how minimal our providers do in order to truly get proper diagnoses and be more proactive versus reactive for patient care.”

It was many years later when her cardiologist read the Tilt Table Test again during her first pregnancy. The doctor was shocked Ja’Mia hadn’t been diagnosed with POTS during that first test—he said it was an obvious case. Since then, Ja’Mia learned how to avoid her triggers and manage her symptoms. She’s learned how to pace—to do what she can with what she has at that moment. As mentioned earlier, many people with ME/CFS use spoon theory, where they have a set number of spoons a day and choose carefully where they put that energy.

What’s important about Ja’Mia’s story is that it’s a more typical, rather than unusual story, of someone who developed Long Covid in those early waves of infection. She is not an affluent white woman who went from a vivaciously healthy life to falling into ill-health, as is often conveyed in the media. She is a highly educated black woman who was already living with a disability when she was diagnosed. Indeed, many of the people who are highest risk for Long Covid are those who remain in the shadows of the public imagination. “These stories are rarely told,” JD Davids, an AIDS activists, turned ME activist, turned Long Covid activist, told me. “Everyone wants to hear about the healthy person whose life was turned upside down from the disease. The trans, disabled, and neurodiverse communities have higher rates of Long Covid than others but rarely get attention.”

Krista Coombs, a Long Covid activist and a mom who has had Long Covid since 2020, described how emotional it has been to also nurse two daughters living with illness. One was so sick she couldn’t stand and was in bed for two years because her headaches were so debilitating. The other had frequent headaches and other symptoms. We discussed the possibility of neurobiological underpinnings that may cultivate some form of vulnerability for this type of family take-down. She said, “People who are neurodiverse are getting Long Covid at higher rates, as well as people who were already disabled before SARS-CoV-2. In many cases, their disabilities are made worse and they also develop new symptoms and conditions.”

Many of those with the most severe cases of Long Covid were infected during the first or second waves. Ja’Mia was infected in March 2020, and she’s had many of the typical symptoms: debilitating fatigue, headaches, muscle weakness—and “everything continued to downgrade.” Her cardiologist did a full workup and they found her inflammatory markers were elevated dramatically. They sent her to the Cleveland Clinic, which was four hours away and she said, “they threw a textbook at me.” She saw a neurologist, rheumatologist, cardiologist, ophthalmologist, and others. They diagnosed her with small fiber neuropathy, POTS, fibromyalgia, Sjögren's syndrome, sleep apnea, and Long Covid. Although earlier she struggled get a diagnosis at all, now it was unclear what to tackle first, how, and where.

Ja’Mia said, “If I weren’t a nurse, I don’t even know where I’d be right now. That’s why I’m so concerned about people who don’t have a healthcare background. They don’t know what their rights are. That they can get a second opinion. That they can go out of state to get the care they need. What does it look like? Long wait times, bad bedside manner. It’s exhausting.”

Photo by Nappy on Unsplash

In many ways, Ja’Mia is the best-case scenario. First, she was aware of her body, her rights, and her needs. When things felt wrong, she sought care, was believed, and sent to a specialty clinic where they cared for her. Even though her care was completely disorganized and dysfunctional, she had the education and awareness of the medical system to manage it and get the care she needed. However, for so many people around the world, they feel dismissed, disbelieved, or undermined during their clinical encounters. This fuels an extraordinary amount of mistrust, particularly among Black Americans. I spoke to a nurse practitioner in Chicago who said they were not encouraged to diagnose Long Covid. She looked me in the eye and said, “The symptoms are real but I’m not sure Long Covid is real.” This is an extraordinarily common response by clinicians who are too overbooked, overburdened, or overwhelmed to take these complex cases without clear diagnoses seriously. For many, I’ve been told, it’s simply because they are not trained to identify, diagnose, or treat complex chronic conditions like POTS, ME/CFS, and Long Covid. This is why so many doctors blame the patients, saying, it’s all in your head! And then they are dismissed to the next doctor, or a specialist.

Medical anthropologist Abby Dumes provides another explanation, comparing Long Covid to Chronic Lyme. She wrote in the New York Times, “Contested illnesses pull back the curtain on medicine itself: how it understands the human body, what counts as evidence and how medicine draws on that evidence to produce medical truths.” Dumes suggested that the complexity of diagnosis, particularly when cases present in entirely different ways, can produce uncertainty. This is particularly difficult with complex chronic conditions where signs (like a bulls eye mark on the skin for Chronic Lyme, or COVID antibodies for Long Covid) trump symptoms. Yet, when conventional medicine doesn’t deliver answers and symptoms prevail, many people seek answers in alternative and complementary medicine. One remedy, she argues, is for clinicians to admit when they are uncertain.

“Another aspect is being a Black woman,” Ja’Mia continued. “Obviously, there's a lot of people who don't understand and try to minimize it. It is what it is. Racism is alive and well in the U.S. I've experienced myself first hand as a patient, and I've witnessed it myself first hand in the professional setting. And so with that being said, if you have patients who are minorities that are saying things, but you already have this preconceived notion of what you think they all are, then you're not really, truly listening because you're not there for the patient.”