At What Point Does Medical Gaslighting and Patient Blame Become Negligence and Malpractice? COVID-19 Long Haulers Quote Their Providers.

The COVID-19 Pandemic has been wreaking havoc in the United States for a year now. There are an estimated 3–10 million Long Haulers in the U.S who have not recovered after being infected by the virus. The experiences we have faced with the unknowns, medical gaslighting, medical neglect and malpractive, patient blaming, and ego’s too large to admit they just don’t know or were wrong have run rampant within the Long Hauler community. It seems like just when you think you have heard it all, another post pops up that causes your jaw to drop and your fist to clench. Sadly, we are not the first population to face this. Chronic illness communities like ME/CFS, POTS/ Dysautonomia, EDS, MCAS, Autoimmune and Chronic Pain communities are all too familiar with what Long Haulers are now facing and have been fighting for years, some decades, for providers to recognize, accept, learn about and treat their illnesses. Additionally, most Long Haulers have now become members of the above mentioned chronic illness communites due to their COVID-19 infection, regardless of acute-case severity.

With Long Haulers and Long Covid, now known as PASC (Post-Acute Sequela of Covid-19), being recognized by the NIH, CDC, WHO and the White House, we hope that we can be taken more seriously and we hope that we also bring awareness to these other chronic illness communities through the research that will be done for PASC. There is still a ton of work to do in terms of awareness campaigns, education for patients, their families, medical providers and employers, and advocacy for programs, protections, and recognition, especially at the state levels.

The Covid-19 Longhauler Advocacy Project has been hard at work advocating for months. We have managed to get a lot done in a short period of time, and we are very thankful for all of our new partners, who are also all too familiar with the below experiences, who have joined us as part of the Long COVID Alliance. With some national efforts and research programs starting thanks to the $1.15B for Long COVID research through the NIH, we are now focusing heavily on the state advocacy efforts. We believe that the best way for you to get help, is to start right where…