Here is my illness and disability story. Before I got sick I was living my best life, a multitasking supermom and business owner. I ran 2 businesses, volunteered at my church and several non profits,, while homeschooling my young son.
Mid -March 2020 my family and I got a very mild illness. Runny noses, a light sore throat, mild fatigue and low grade fevers. No cough, or shortness of breath. Which meant, we were denied access to a Covid test.
Then in May, my life was forever changed. I had my first incident that sent me to the Emergency Room. Little did I know it would be the first of over 30 trips to the ER from long Covid.
That night, I went to eat a piece of shrimp, my all time favorite food and I felt strange. My jaw felt tight, I couldn't swallow, my heart raced, I felt dizzy. I didnt know if I was having an allergic reaction or a heart attack!
At the ER the tests showed nothing alarming. The nurse told me it was an allergy and anxiety. But I knew something was terribly wrong. Plus a few weeks later it happened again. After eating a piece of fruit, my heart rate soared at over 160 and I had temporary paralysis of my mouth, arms and legs. I remember sobbing as my limp legs had to be dragged out of the car and into the ER. Yet every time I went to the ER, the hospital staff said nothing was wrong.
Over the next 4 months I became hyper reactive to everyday foods and chemicals, including everyday cleaning products. I lost 50 pounds and became a wheelchair user.
Now, a year later, I continue to struggle with unprovoked bouts of exhaustion. When I get tremors from a flare I am back in a wheelchair. I am still having trouble with mobility and fatigue from general physical exertion . I still have regular bouts of brain fog and am currently seeing a memory specialist to help my memory deficit.
So , the next question you gave us was, what else do I want to share about my illness and disability, speaking as a person of color and as a woman.
As a woman of color I have an added set of challenges when it comes to gaslighting and dismissal concerning care I receive in almost all medical settings. I find that I am treated either like a hysterical bother based upon my gender or as a violent threat based on my skin color and last year when I needed life saving medical intervention, those biases ,caused a threat to my life.
Here is one example, September 2020 I went to the Emergency room, because my oxygen was dropping to dangerously low levels. The nurse screamed at me to leave immediately! She refused to run tests, threatened me with arrest and had hospital security push me out of the room in my wheelchair in the span of 5 minutes. Thankfully, I had the presence of mind to film this incident live and later the Washington post ran the video when they profiled my long covid struggle!
I later discovered that, that hospital had drug tested me 3 times, without my knowledge for illicit drugs. Even though I would test negative for illicit drugs each time and never asked for pain medication. I was still treated like a dangerous drug seeking criminal.
I soon learned other black longhaulers were also tested for illicit drugs without their knowledge while receiving care in the Emergency room. Professors, firefighters, teachers. It didn't matter the profession, geographic location, or income. The same racially biased behavior and dangerous level of neglectful care occurred time and time again.
As a society, I find that we continue to minimize the loss of life that occurs from racial and gender bias. But it needs to be taken more seriously. Though I am able to tell my story. There are others who lost their life unnecessarily. That is something we all need to remember and there continues to be this issue even present day with long covid care in minority communities.
The last question you asked, was what are some ways my state government -- including the Mass Dept of Public Health -- could help someone like me?
State government needs to do a better job at setting aside and expediting financial assistance for long haulers and others with post infectious chronic illness. Many longhaulers are being evicted, or becoming homeless due to disability and being unable to work, earn an income, and thus pay rent.
Furthermore, the process of applying for social security disability is cumbersome for those with cognitive impairments and the approval process can take years. So how can anyone avoid eviction when financial assistance lags behind our need? I know two people with long covid who are about to be evicted. Another two that became homeless. Recently one longhauler who became homeless. died hours before his disability application was approved.
Speaking about social security disability, since we are immune compromised and vulnerable to reinfection, we need social security evaluators to mask up. I have a friend who also, is a black woman who requested her white evaluator to wear a mask. He became hostile and irate and refused to continue the evaluation.
There are many chronic illnesses that overlap in terms of symptoms, disability and the need government assistance. Lyme disease, ME/CFS and those with other post infectious chronic illnesses have the same issues as long covid. State government needs to do a better job educating doctors and specialists on how to diagnose and treat these illnesses.