Over the past three months, as much of the world has lived in quarantine because of COVID-19, we have witnessed a disproportionate burden of illness and death among racial and ethnic minority groups. We have witnessed heinous acts of violence against individuals of color, and the destruction of American cities that further threatens and oppresses these communities. We have witnessed the tragic deaths of George Floyd, Breonna Taylor, Ahmaud Arbery and sadly, many others.

Stating that “Black Lives Matter” is not negating all other lives. It is acknowledging racism and systematic oppression against Black lives. It is a reminder to the world that Black Lives Matter and deserve to be treated equally. Because of the pandemic and other current events, Black people will have a disproportionate level of grief, trauma, and funerals.

As a Black woman, living in a Black neighborhood, living with POTS and other chronic illnesses, I have both seen and experienced the impacts of our world’s current events. I have had anger, fear, sadness along a rollercoaster of other emotions. I hurt because I am a Black woman. I hurt because of the trauma I have experienced in the past dealing with racism and discrimination. I hurt because of the racism I have personally experienced when dealing with the healthcare system. I hurt because I have two Black brothers, who I fear that one day will be seen as intimidating and may be injured (or worse) at the hands of racially motivated violence. I hurt because while standing outside in front of my house with the dog waiting for her to go to the bathroom, with every car that goes by I have to worry about cops arresting me or worse for being out after curfew, or one of the White vigilantes that have been terrorizing Black people in my city. I hurt because of the heartbreak of seeing my community being torn to pieces. This constant state of grief and anxiety isn’t good for anyone, but especially someone living with a chronic illness. There is evidence that racism is associated with physical and mental health consequences, so imagine adding the layer of preexisting chronic illness to that. This is what I face, along with many others in my community. 

Since I started my POTS journey over ten years ago, I have not found many people in support groups, research studies or media coverage about autonomic disorders that look like me, a woman of color.  It is both frustrating and isolating not seeing the Black community or other people of color well-represented in the chronic illness world. I would love to tell you this is because people of color don’t suffer from chronic illness that often, but unfortunately, that’s not the case. 

As I have mentioned in my previous blog post, What Solange’s Announcement Means to Me, “[r]esearch data shows that POTS, one of the most common autonomic disorders, is much more common in the Caucasian population (about 94%-96%), but it isn’t clear how much these percentages are influenced by major gaps in access to quality health care  for people of color.” Furthermore, many in the Black community don’t trust the systems we have to diagnose chronic illnesses after the long traumatic history that we have faced with the U.S. healthcare system, through examples such as the Tuskegee syphilis experiment, Henrietta Lacks, and eugenics. 

POTS is a condition with a long diagnostic delay, regardless of race, due to lack of physician and public awareness. It is likely that people of color have an even more difficult time getting diagnosed because of the healthcare system distrust and discrimination. As I had mentioned in my previous post, “[o]nce a person of color is able to access health care, many research studies on a wide variety of medical problems show that racial discrimination in health care is a serious and far-reaching problem, with doctors often dismissing symptoms, refusing to offer treatments, forgoing tests and missing diagnoses more often in people of color than in Caucasians.” In terms of the autonomic nervous system, research shows that heart rate variability among African-American’s is impaired in geographical locations with higher levels of perceived racism, and reduced heart rate variability is harmful to your health.

Through personal experience, I can tell you that many Black people in the chronic illness community don’t speak out. We don’t join Facebook support groups as often because of the fear of our family and friend’s reactions, the stigma involved with having a chronic illness. We don’t join social media conversations because of fears of discrimination and the isolation associated with lack of representation.  

The overall racism and discrimination contributes to the inequalities that have left people of color with unbelievable health disparities, and worse overall health outcomes in the United States.  

Now, people are gathering in cities around the world to protest against the racism that hurts Black lives, that we have had enough of the mistreatment because of our skin color.  As a Black woman, I can’t help but feel a bit helpless because I can’t physically get out to attend the peaceful protests or help clean up the destruction. There is no evidence that POTS puts individuals at increased risk of serious complications from COVID-19. However, due to physical mobility issues, complications of my Sjogren’s syndrome (a cause of my autonomic dysfunction), and immunosuppressant medication I am on for my Sjogren’s syndrome, peaceful protesting is not possible.

These protests are happening in the midst of a pandemic, where the threat of COVID-19 is still very real. For the millions who are immunocompromised or live with severe chronic illnesses that put them at high risk, it is difficult to be around large crowds in general, but even more with the threat of COVID-19 in our communities.  

However, the behind the scenes work is just as important as in person protesting.  You can educate yourself on the issues. You can provide other levels of support by sharing factual media on social media, making phone calls, raising funds, supporting Black owned businesses, community planning, or just reaching out to the people of color in your lives. 

I am proud to be part of Dysautonomia International, an organization that has openly condemned the racism in our world. Furthermore, Dysautonomia International  is committed to everyone, worldwide, living with or affected by any form of dysautonomia.  

To my fellow Black people: We are listening. We hear you. Your lives matter. You are not alone.

Guest blogger Natasha Graves, MPH, MBA, CHES is the founder of VacayAbility, a website focused on accessible and inclusive tourism. Holding a Masters in Public Health, she uses her skills to teach others about the health conditions that she battles, blogging at myhiddentruths.com and volunteering on Dysautonomia International’s Patient Advisory Board.

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