Climate change is worsening symptoms of Long Covid and POTS. Here’s how people are navigating it.

This spring, a record-breaking heat wave swept through Brazil, triggering fires, exacerbating drought, and testing the country’s energy grid. Fernando Santos, 33, who had been living with Long Covid and postural orthostatic tachycardia syndrome (POTS) since June 2021 and had made some progress in his recovery, began to decline when the heat arrived in Rio de Janeiro. Santos developed chest pain and fatigue so severe that he had to temporarily withdraw from his classes, where he was studying as an electrical technician student. 

Santos is one of many people with Long Covid who have been diagnosed with POTS, a form of autonomic dysfunction. Cases of POTS have been on the rise since the pandemic began, and research shows that a significant number of people who contract Covid-19 go on to be diagnosed with POTS within six to eight months of infection.

Common symptoms can include heart palpitations, temperature dysregulation, fatigue, exercise intolerance, headaches, fainting or feeling like you are going to faint, and lightheadedness — especially in upright positions, or when going from sitting to standing. 

Many of the over 100 million people with Long Covid and various forms of dysautonomia around the world are struggling to manage symptoms as temperatures climb. Many people with POTS have sweat glands that are damaged or work differently, leading to significant heat intolerance, according to Dr. Svetlana Blitshteyn, director of Dysautonomia Clinic and clinical associate professor of neurology at the University of Buffalo Jacobs School of Medicine.

Blishteyn noted that common medications prescribed to Covid-19 long-haulers, including antihistamines, migraine medications, and medications used to manage neuropathic pain, can also inhibit one’s ability to sweat. Birth control and some antidepressants can have a similar effect. 

“I advise all of my patients to avoid heat,” said Blitshteyn. She warned that heat-triggered symptoms — which may resemble heat stroke — can sometimes emerge without warning, and that everyone’s threshold is different. 

Blitshteyn cautions her patients that temperatures that might have felt tolerable pre-Covid or that seem tolerable for family and friends may not be safe for people navigating autonomic dysfunction. “It’s not uncommon for our patients to have a limited range of temperature where they feel good,” Blitshteyn said. 

This is true for Santos, who used to practice jiu-jitsu in the summers before he got sick, often in a space that lacked air conditioning. Now, he says he struggles to be in spaces without air conditioning, let alone exercise in these spaces.  

Padma Priya DVL, 38, who was born in Andhra Pradesh, a region of India known for its summer heat, said that before she got sick, she was accustomed to temperatures of up to 116 degrees Fahrenheit. Her tolerance is very different now: “I simply cannot withstand heat…it’s like a machine that is malfunctioning.”

Tinu Abayomi-Paul expressed a similar experience. “I am an African and both of my parents are African,” she said. Abayomi-Paul also lived in Las Vegas for seven years before moving to Texas more recently, and said, “the dry heat barely bothered me.” Now, however, after developing Long Covid, Abayomi-Paul has found the Texas heat to be intolerable.

“It saps my energy,” she said. “[It’s] very worrisome for me because of climate change.”

Extreme heat is a public health issue

According to a May 2024 report, climate change added an average of 26 days of extreme heat over the last year. In 2023, emergency room visits for heat-related illnesses reached an all-time high, and over the last 30 years, extreme heat has contributed to more deaths than hurricanes, floods and tornadoes combined — and heat-related deaths are often undercounted. 

Extreme temperatures have been shown to contribute to miscarriages, racial learning disparities, and greater mortality from common cardiovascular conditions and kidney disease. Combined with Covid-19, they’ve also led to two times the level of excess deaths in this decade than during the previous decade, according to one study of deaths in England and Wales.

This spring, India broke heat records, resulting in authorities imposing water rations. “These are very, very extreme temperatures…even a person without a chronic illness cannot handle it,” DVL said. She is concerned that disabled and chronically ill people like her are “invisible” to authorities during these sorts of climate emergencies. When the heat hits, DVL experiences excessive sweating, tachycardia, cognitive dysfunction, and a feeling of perpetual dehydration. “No amount of water helps,” she said. “I cannot even hold a proper conversation.”

Many people with Long Covid and related illnesses described heat-triggered “episodes,” in which symptoms worsened temporarily during exposure to heat. But others, like Santos, described an overall decline in health during hot seasons. DVL, who experiences migraines as part of her Long Covid symptoms, said those attacks become much more frequent during “bad summers.” 

“Living with heat often makes life harder for disabled folks” even if it doesn’t prompt a distinct “heat crisis,” said Julia Watts Belser, a professor at Georgetown University who directs the Disability and Climate Change archive project. Besler uses the term “chronic crisis” when considering health impacts of climate change, to describe both the chronic nature of extreme weather and the ways that ableism, poverty and other forms of inequality steadily exacerbate these issues.

“We have a tendency to focus on these big event crises in a way that misses the day-to-day precarity of so many sick and disabled people’s lives,” she said. 

Extreme weather can also take a toll on overall quality of life, preventing chronically ill and disabled people from accessing career opportunities or participating in community events. 

Maisie Thompson, 37, who is involved with local community organizing groups in Atlanta, said she now often has to forgo protests, marches, and rallies during the summer because of her POTS symptoms, which she’s had for 16 years. “Summers are rough for me,” Thompson said. “I’m less active. I get less sun. My mood is down.”

DVL, who is a journalist, said she’s similarly had to rethink her work, since her ability to speak with sources on the street is more limited during hot months. Santos, too, worries about his ability to sustain a career: “It’s hard to see how I will work and [survive].”

We have a tendency to focus on these big event crises in a way that misses the day-to-day precarity of so many sick and disabled people’s lives.

Julia Watts Belser

Mitigating heat-triggered illness

While these strategies are useful, DVL said there are so many people who can’t do all these things for economic reasons, or who may not know their symptoms are triggered by heat. DVL’s rent is higher because she needs a house with air conditioning. She knows another person with Long Covid in India who has worked remotely from a local IKEA in order to access free, cool air. 

“My hope for the future is that I will be able to afford more mitigations, help, and protections for my illness,” Abayomi-Paul said. “Because I can’t afford my sickness.” Despite investing in solar panels, Abayomi-Paul has dealt with three power failures during outages already this year. Because she relies on oxygen to survive in extreme heat, she had to get herself to the hospital quickly when the energy grid collapsed.

Some people, like DVL, have relocated in search of environments that are more suitable. DVL and her family escaped the extreme heat of India this summer after moving to Brisbane, Australia, which they chose in part because of its comparatively temperate climate. 

Thompson said she’s also considered moving, but her work and community have kept her in Atlanta. Blishteyn said she’s had patients from southern states move further north, but pointed out that even in New York City, summers are increasingly dangerous for people with heat intolerance.

Hopes and fears for the future

People with Long Covid and POTS are not the only people to contend with heat intolerance. Lupus, multiple sclerosis, Graves’ diseases, and psoriasis, among other chronic illnesses, can also cause difficulty regulating temperature. Many with these diseases are concerned that disabled and chronically ill communities will be left behind as climate change worsens. 

“My fear for the future is that those of us who cannot tolerate the heat will die,” Abayomi-Paul said. “Another fear I have is that no one will listen.”

“It’s only going to get worse,” said DVL. Given that warming temperatures also increase the likelihood of new infectious disease outbreaks via zoonotic viral spillovers and microbes released by melting permafrost, it’s no surprise that those disabled by our most recent pandemic are worried. As Anthony Fauci wrote in 2020, “We have entered the pandemic era.”

Still, potential solutions exist — from better public health education, to improved labor laws, to greater investment in learning from disabled communities. DVL said a first step to being able to mitigate heat-related harms is understanding that you may be experiencing them. Blishteyn is concerned that physicians may not know to warn their Long Covid patients to “stay away from heat.”

Public health education has a long way to go when it comes to extreme heat. Most people still don’t understand the difference between a heat watch, heat advisory, and heat warning, and very few policy-makers are advocating for clean air as a solution for both mitigating heat-related climate harms, including wildfire smoke, and the spread of infectious diseases. 

My fear for the future is that those of us who cannot tolerate the heat will die. Another fear I have is that no one will listen.

Tinu Abayomi-Paul

In one potential step, environmental organizations filed a petition to FEMA to categorize extreme heat as a “major disaster.” Doing so would allow disaster relief funding to be used on cooling centers, air filtration systems, and better energy solutions and climate disaster preparation, as well as potentially enabling advocacy for better labor laws. Besler argues that we may also need to consider “remote work as a hot weather strategy” for everyone, similar to how some states structure “snow days.” 

Besler is wary of placing the burden of change on individuals, but also believes that “disabled folks have powerful and important social and political insights about climate change in part because we are more intensely affected.”

“People who are living with energy-limiting conditions know intensely, personally and viscerally what it means to have to marshal energy and make careful decisions about when and how to spend resources,” Besler said, arguing that disabled communities can lead a cultural shift toward “slower, more sustainable, more care-filled ways of being with one another.” 

If we’re facing an energy-crisis, she said, people with energy-limiting illnesses and disabilities might just be the people to help us navigate through.

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Fiona Lowenstein (they/them) is an award-winning independent writer, journalist and editor, covering health justice, wellness culture, LGBTQ+ issues and more. Their writing has been published in The New York Times, The Nation, Teen Vogue, WIRED, Vox, The Guardian and Business Insider, among other publications. They are the editor of The Long COVID Survival Guide, and the founder of Body Politic, which housed one of the first Long Covid support groups from 2020-2023. They are based in Los Angeles.

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