Model and artist Shaun Ross recently opened up about his struggles with Long COVID and POTS, noting all the ways in which his life has seemingly turned upside down following his diagnosis. Close friend and fellow artist Solange Knowles left a comment of support on Instagram, noting that she had been struggling, too.
“I got diagnosed with POTS, Sjogrens and Mcas in 2018 and really relate to not wanting your health to be your identity,” she said.
Adding that she’s familiar with Ross’ debilitating, confusing and lonely symptoms, Knowles gave the world a glimpse of insight into her silent struggle. Being that she is an integral figure for Black women and creatives, this revelation led many to further inquire about POTS and what this diagnosis looks like.
“The good folks at Dysautonomia International were really an incredible resource for me and I feel really grateful for the spoonie community for holding me down during my times of complete uncertainty,” she said.
Liza Fisher, a board member of Dysautonomia International and co-founder of BIPOC Equity Agency spoke with 21Ninety about POTS struggles and its impact on Black women.
21NINETY: For anyone completely unfamiliar, what is POTS?
LIZA FISHER: For those unfamiliar, POTS, which stands for postural orthostatic tachycardia syndrome. It is a common form of dysautonomia, which is an autonomic nervous system disorder. It’s commonly characterized by an excessively fast heart rate and feeling light headed.
21N: What are the signs you may be struggling with POTS?
LF: There are many signs for those struggling with POTS. Individuals may experience more common symptoms such as an excessively fast heart rate and symptoms of lightheadedness upon standing. POTS patients also may experience a drop in blood pressure upon standing, experience low blood volume, neuropathy, fatigue, headaches, nausea, “brain fog”, tremors, post-exertion malaise or exercise intolerance, cold extremities, chest pain and syncope. The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute or more, or over 120 bpm, within the first 10 minutes of standing in the absence of orthostatic hypotension. in children and adolescents, a standard of a 40 bpm or more increase has been adopted.
21N: Why is POTS seemingly associated with long covid?
LF: The onset of POTS for many can be linked to a viral infection. However, it can occur after any trauma like concussions or car accidents and even after giving birth for some women. Currently, a significant number of individuals develop a form of dysautonomia, mostly POTS.
21N: Is there a treatment for POTS?
LF: Currently there is no cure or FDA-approved treatment for POTS! Research is sparse, however, Dysautonomia International works with researchers and fund research projects to help the millions afflicted with this condition. We welcome those interested in research or contributing to our research fund to go to. Many find relief or improvement through common lifestyle changes like increasing fluids to 2-3 liters per day; increasing salt consumption to 8,000-10,000mg per day; wearing compression stockings; raising head of bed; reclined exercise; a healthy diet and avoiding substances and situations that worsen symptoms. For those fortunate enough to get diagnosed and find a provider willing to treat them some off-label medications used are Fludrocortisone, Beta Blockers, Midodrine, Clonidine, Pyridostigmine, Benzodiazepines, SSRIs, SNRIs, Erythropoietin and Octreotide.
21N: As someone struggling with POTS, what is the emotional impact?
LF: The emotional impact of struggling with POTS is a roller coaster! The fluctuating energy levels and exacerbation of symptoms adds to the mental toll of trying to maintain balance. The diagnostic journey can make one feel ostracized from the life before diagnosis. My onset was from a severe Covid infection in 2020 so I did not have to battle as much gaslighting from the medical community about the legitimacy of my diagnosis. I did and still do have to fight institutionalized racism in healthcare. There is a condition called skin mottling that can occur with POTS and MCAS. However there are no pictures of skin mottling on black skin tones.
Healthcare providers aren’t even trained to look for it. The diagnosis or explanation of “anxiety” is overused due to lack of knowledge actually gives one anxiety! Social interaction completely changes as your symptoms make you a flake, distant and disassociated at times. Subsequent PTSD from medical trauma affects everyday life. My life went from private flight attendant to being a professional patient. I didn’t have as much in common with friends. I no longer enjoy traveling the world, going to bars, dancing, dining out. It’s hard to tolerate large crowds, bright lights and loud noise. It makes going to concerts, games and girls trips memories instead of plans. MCAS has made going outside impossible at times due to allergic reactions. Being that COVID-19 and the COVID-19 vaccine was politicized, it changed relationships with friends and family even more so.
21N: Does POTS impact women or women of color in particular?
LF: Statistically POTS does impact women more, however it can affect all ages, races and genders. It is most often seen in women of childbearing age (between 15-50). Men and boys develop it as well, but about 80% of patients diagnosed are female. Yes, it impacts women of color although we are historically left out of the conversation. The diagnostic and treatment delays seen in individuals with POTS are significantly longer in women of color. This leads to poorer long-term health outcomes. It is also more difficult to address the associated comorbidities and mental health concerns among women of color. Since the pandemic, the awareness in communities of color is growing. More black women are identifying with POTS and providers are able to recognize it. We still have a lot of work to do, though.
21N: What do you wish the general public knew concerning POTS?
LF: I want the general public to know that it exists and is real! I want the general public to understand they probably know someone in their circle who struggles with this daily in silence. Those confused about their symptoms should have the knowledge to put the pieces together. I want practitioners to be aware and willing to treat those with POTS, especially women of color.
21N: Solange shouted you guys out for helping her through the loneliness of her POTS, Sjogerns and MCAS diagnosis in 2018. Can you speak to the nature of her diagnosis at all?
LF: DI saw that as well and we certainly appreciate the shout out. I think anyone with those diagnoses appreciated that shout-out and recognizing what they live with impacts celebrity. I cannot speak to Solange’s personal healthcare journey. However, I welcome her or any other black women who would like to share their story in a safe space cultivated by other black women with these conditions to reach out.
Representation matters. As a black woman myself, I have found comfort in the BIPOC support groups and seeing those who look like me share their stories as well. I can say that the resources available. The support networks and the advocacy within Dysautonomia International help millions around the world with their healthcare journeys. The support groups really help with loneliness during the diagnostic phase as most do not have people around them who will understand what they are going through. We do. For any POTSie, Spoonie or invisible illness friends out there looking for a safe space, we’re here.
This article has been edited and condensed for length and clarity.