The rate of postural orthostatic tachycardia syndrome (POTS), has been on the rise in the wake of the COVID-19 pandemic. This life-changing condition mostly impacts young women and leads to a variety of debilitating symptoms, such as irregular heart rate, dizziness, brain fog, and fatigue.
While there is no cure for POTS at this time, there are some treatments available to alleviate patients' pain and help them live a better overall quality of life, including physical therapy and focused attention on exercise, diet, and nutrition. However, many patients are left battling chronic pain on their own as the rate of POTS continues to rise, stranding many affected individuals without access to sufficient medical care.
Why is it so difficult for POTS patients to obtain the appropriate standard of care they deserve? Keep reading to learn more.
What Is POTS?
POTS is a life-altering condition that affects the autonomic nervous system, making it difficult for the body to balance heart rate and blood pressure. This crucial imbalance in POTS patients occurs when blood vessels don't respond to normal hormones (norepinephrine and epinephrine) intended to increase blood flow throughout the body.
When POTS patients stand or move, blood tends to remain pooled below the heart instead of being pushed back upward to the brain and heart. As you can imagine, this can lead to a range of troubling symptoms, including (but not limited to):
- Rapid heart rate
- Feeling faint or fainting
- Dizziness, especially when standing up
- Shortness of breath
- Excessive sweating
- Headaches
- Chest pain
- Brain fog
- Shakiness
- Fatigue
Like many other chronic illnesses, POTS is not well understood by healthcare professionals at this time, making the search for accessible, affordable care from a competent physician all the more stressful for POTS patients.
Experts Report “Dire Shortage” of Medical Professionals for POTS
While the number of POTS specialists in the medical industry has remained consistent since the start of the pandemic, experts estimate that the POTS rate has at least doubled.
“We need to increase the amount of experts in this,” says Lauren Stiles, president of Dysautonomia International, a nonprofit advocacy group seeking to improve the lives of people living with autonomic nervous system disorders. “It wasn’t enough before COVID, and it’s certainly not enough now.”
“The lack of answers is the most frustrating thing I have to go through,” says one 17-year-old Texan, who went on to develop POTS after her 2022 COVID infection. “I know that more and more people are getting [POTS], so why is it not being talked about?”
Can COVID-19 Cause POTS?
Before COVID-19 struck in 2020, an estimated 1-3 million U.S. people were believed to suffer from POTS. Today, a few years after the start of the pandemic, experts estimate that a staggering 1 million new patients now suffer from this often-overlooked illness that deserves more attention and care.
While the cause of POTS is still unclear, research shows that many patients developed the disorder after COVID-19 infections—which is nothing new. According to cardiac sciences professor and POTS expert Satish Raj, POTS symptoms often develop following viral infections.
Research is still underway to determine more information regarding the link between POTS and COVID-19, but experts predict that the coronavirus may be a trigger for POTS. Moreover, COVID-19 infections needn’t be severe for an individual to develop this condition, as even people with mild cases of COVID have gone on to develop POTS.
Why Are POTS Patients Struggling to Find Care?
While the number of POTS patients has surged in the U.S., available healthcare has not. Just two short decades ago, this illness wasn’t widely recognized or considered a “real” condition in the medical industry. It didn’t even receive its diagnostic code until late 2022.
Why are patients struggling to obtain proper medical care to manage and alleviate POTS symptoms? Below are 3 reasons why so many POTS patients are reaping the injustice of this nationwide crisis:
POTS patients are stuck in a 2-year waiting list.
There are very few doctors who can proficiently diagnose and treat POTS with the appropriate standard of care. Because of this, many women with POTS end up seeing multiple physicians before finding an acceptable provider.
One study showed that the vast majority of patients weren’t diagnosed for 1 year or more after scheduling an initial appointment. Another revealed that 30% of long COVID patients are believed to meet the criteria for POTS. Of these, 36% were women compared to 7% of men, which begs the question: when will afflicted women receive the validation, urgency, and quality of care that they rightfully deserve from medical professionals?
Women’s pain is routinely dismissed in the medical industry.
Because most POTS patients are women, it’s safe to assume that the historical pattern of dismissing women’s pain is a major part of the issue at hand. POTS patients are no exception to this outdated and discriminatory practice in the medical industry.
“There’s an element of dismissiveness and misogyny in the room,” says Satish Raj. “The POTS demographic is women who, for the most part, look pretty well. They complain that their heart is racing, and I think that gets dismissed as anxiety a lot.”
POTS is understudied and underfunded.
Throughout history, POTS has received little attention and little funding. This should come as no surprise considering the illness didn't even receive its diagnostic code until the end of 2022. While well-known organizations like the National Institutes of Health (NIH) allocate generous funding to other diseases, such as multiple sclerosis and lupus, its contributions to the study of POTS has been appallingly low in comparison.
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