You are currently viewing “Everyday I am walking the tiniest tightrope of forward progress” – Cynthia, USA

“Everyday I am walking the tiniest tightrope of forward progress” – Cynthia, USA

In March 2020 my family and I got a Covid infection so mild we were denied access to a Covid test. But on Mothers Day, May 10th 2020, my life changed forever when I had the first incident that sent me to the Emergency Room. After eating a piece of shrimp, my jaw felt tight, I couldn’t swallow, my heart raced, I felt light headed and dizzy. I had to sit on the couch trying to figure out if I was having an allergic reaction or a heart attack! 

Tests showed nothing alarming to the medical staff. The nurse told me it was an allergy and anxiety. Little did I know it would be the first of over 30 trips to the ER as a result of Long Covid.

A few weeks later there was another terrifying incident. After eating a piece of fruit, my heart rate went over 160 and I suffered temporary paralysis of my mouth, arms and legs. I remember sobbing as my limp limbs were dragged out of the car and into the ER. I knew something was very wrong! But hospital staff disagreed. My primary care doctor did her best to refer me to specialists, but each one I saw just referred me to another. 

Before I got sick I ran 2 businesses from home, while homeschooling my young son and volunteering at a nonprofit. But in just 4 months, I lost 50 pounds and became wheelchair dependent. Yet still hospitals didn’t believe the symptoms I described and continued to assign them to anxiety. 

I’d lay awake, night after night, thinking mournfully about the very real potential of my son growing up without a mother and even planning my funeral arrangements. As my struggle to survive continued, I realized my greatest hurdle wasn’t finding treatment, it was convincing medical staff.

So at the beginning of September 2020, when my oxygen levels started dropping to 85%, I began video recording my symptoms and hospital visits. As a Black woman, it seemed my words alone weren’t good enough. I knew that I needed to have proof that I was very sick and being denied adequate care. 

However, the next time I landed in the Emergency Room, seeking medical help during an episode of dangerously low oxygen and high heart rate, I was threatened with arrest by Emergency Room hospital staff! I later found out that, in response to the Long COVID symptoms I presented with, this same hospital had, without my knowledge, tested me 3 times prior for illicit drug use. 

In spite of these drug tests repeatedly coming back negative, during one of my admissions I was even slated to be given medication for withdrawal. Other hospitals treated me as if my symptoms stemmed from mental illness or anxiety. It was at this point I decided to become a chronic illness advocate. 

I was eventually diagnosed with ME and POTS at the end of 2020. Although my MCAS (Mast Cell Activation Syndrome) symptoms started to improve in 2021, it still takes multiple pills a day for me to be able to eat only a handful of different foods. 

I’m proud to be a co-founder of the BIPOC Equity Agency, a beacon of hope led by women of color with disabilities stemming from Long Covid. We’re dedicated to bridging the disparities that persist in various aspects of healthcare, particularly for individuals from marginalized communities.

In January 2023, during a flare, I was brought by ambulance to the hospital. In spite of warning staff about my MCAS, they proceeded to trigger the worst asthma attack I’ve ever had. They refused to administer anything to reverse the allergic reaction even after my throat completely closed and I was unable to talk. I wasn’t given access to a call button for over an hour but placed in the area of the hospital where they hold violent patients. I could do nothing but watch as security had to tackle and wrangle multiple mentally ill men, one of whom screamed about sexual assault and hating women.

These experiences are not rare. Medical facilities unfortunately continue to harm people of color and put hurdles in the way of getting diagnosed. With little visible progress in the education of medical staff concerning the co-morbidities of energy-limiting chronic illness, I live with the harsh reality that I still have little chance of getting care even in the event of an emergency.

In July 2023, a code red air quality warning triggered by Canadian wildfires, exacerbated my MCAS to life threatening proportions, but was blatantly disregarded by hospital staff. On the short journey home I suffered a severe anaphylactic reaction, a dire consequence of the hospital’s neglect and the poor air quality. 

At home, struggling for breath and resorting to emergency medication, I was haunted by the neglect I’ve repeatedly faced at my local hospital, compounded by the defamatory narratives in my medical records that hinder my access to care elsewhere. The stark reality of navigating chronic illness amidst a backdrop of medical racism and climate change adds layers of emotional and physical torment to my journey, undoing the strides I’ve made in healing from past traumas.

Though being chronically ill and mostly homebound is arduous in itself, I am currently also tasked with daily monitoring of my 8 year old son’s vitals. He is an internationally known math and chess prodigy and became a Mensa Member at 5 years old, during the height of my decline in health. But we’ve had little help getting him care for his intermittent struggle with an elevated heart rate, blurry vision, and fatigue from his Long Covid – there is a months-long waitlist to our local post viral pediatric specialist.

Everyday I am walking what feels like the tiniest tightrope of forward progress in my own recovery and his. But adversity has a way of inspiring change, and it has transformed me into a passionate patient advocate. I’ve written a digital Emergency Room Guide for “longhaulers” of color, to increase their access to care. I’ve been featured in numerous national news outlets, including TIME, Bloomberg, USA Today, NBC, and more, shedding light on the struggles and triumphs of Long Covid patients like me.

My commitment to making a difference extends to my roles on the board of SolveME and the CoRE Lived Experience Advisory Board at Mount Sinai. I’m also a Long Covid patient expert trained in research review via University of South Carolina. I’m proud of having played a crucial role in shaping the legislative language for the Covid-19 Long Haulers Act and giving sworn testimony on Capitol Hill as a patient advocate in a Coronavirus Committee meeting.

To the world’s health officials I’ll say this: many patients who have often been too sick to leave their home for decades remain the unsung heroes of the pandemic. Those who rose to the occasion to help others, even without the ability to rise from their bed. Ableism is causing some of humanity’s biggest assets to be overlooked.

#GlobalVoiceForME Cynthia Adinig