Home Posts Here's What Happened When I Told Congress The Dirty Little Secret About Long COVID.
Here's What Happened When I Told Congress The Dirty Little Secret About Long COVID.
Coronavirus

Here's What Happened When I Told Congress The Dirty Little Secret About Long COVID.


I would have said something more intricate and pristine. My words would have been shiny and flattering. I would have smiled more. I might have even told one of the top three stories I keep in my mind's chamber to charm strangers; the kind of story that starts with a challenge but ends in happiness, joy, and redemption.

But it was 402 days later — a year after I died of long-term COVID-19, a medical condition that causes coronavirus symptoms to last months after the initial viral infection.

I'd lost my vision, my money, and, most importantly, my beloved teaching career, and I didn't have any fancy epithets to describe my current state of health after suffering for so long.

I was the only thing I had.

It’s not every day that a Black woman from Baltimore with a short fade and a sassy mouth gets to speak before political officials with enough power and privilege to fund almost anything deemed important in our country.

I had no right to be there, in my opinion.

For a few moments, I was perplexed as to how I had been chosen over all the other patient advocates who struggled more, those who spoke more eloquently without a lisp or stutter. With less than a week to prepare my written testimony, I was chosen to testify alongside some of the most prominent and recognizable medical experts, researchers, and leaders, including Dr. Francis Collins, director of the National Institutes of Health.

With this prestigious opportunity to (virtually) sit in front of a few important white people, I should have been on my best behavior, but if my appearance hinted to anyone on the hearing's panel that I wasn't normal or average, my words ended up making that painfully clear.

Members of Congress would either love me or despise me, but they would never forget about me.

I was raised to have manners and respect for everyone, but as a Black woman raised by another Black woman, I knew the special protocol to follow when I was around more than a few white people at any given time: I was to smile, nod in agreement, and make them feel as comfortable as possible.

I was briefed on the hearing's agenda ahead of time, so I knew my audience; being Black, I also knew my place; I was to be the "diverse" face in the crowd, talking about my symptoms and following prompts when I was allowed to speak.

Looking at the sea of faces across the screen of my laptop, I realized I was one of the few Black people and women present.

I cared about that, but not enough to put on a show of who I was supposed to be just because I was speaking to people I had grown up watching on television and studying.

COVID had ravaged and devastated my life for so long that I didn't have the energy to engage in "politics."

Before the hearing, I established a reputation as one of the few Black female patient-led advocates, and I made the difficult decision to break every rule I had learned about making white people feel good: I wasn't going to censor myself or my experience to please anyone.

Members of Congress would either love me or despise me, but they would never forget about me.

Living with COVID-19's chronic, disabling evil twin, long COVID, quickly taught me to adopt one-hit-wonder Bone Crusher's mantra of "never scared." With only five minutes on the Congressional shot clock, I had no time to be grammatically or politically correct. My words, laden with a Southeast D.C. accent, needed to paint a picture of my life.

“I am now a poor, disabled Black woman suffering from long COVID.”



Completely clear.

long COVID, as well as a discriminatory and broken health-care system, was to blame.

Saying it another way would have been polite, but it would also have been a "bald-faced lie," as my mother used to say.

My testimony was not intended to be a pretty, palatable fairy tale; it was laced with details of racist, sexist doctors who dismissed me despite my long lists of COVID symptoms, which included fatigue, blindness in my left eye, migraines, psychosis, and paralysis throughout my body.

All of these things did occur.

I needed to tell the truth, but I also needed to do something else.

Last May, as we made new discoveries on long COVID, the national media did what they always do: they put white, affluent women at the forefront of news stories.

I didn't want these officials to think I was trying to impress them, so I wore my favorite dress and pearls as a reminder to myself that, even though I am no longer a classroom teacher, there is still something affirming, supernatural, and confident living inside of me that is now educating my community and nation about an illness that threatens to disable up to 30% of Americans who have had it.

I dared them to take a closer look at me, well-dressed and outspoken, with a now-empty savings account and a misaligned spine. My tone carried the wounds of my new disability, the kind that no neurological tests could accurately show; the kind that silently ate away at my brain and ability to effortlessly teach my students how to write organized sentences and essays.

At the time, I couldn't spare the panelists my scornful account of being one of the first and few Black women to publicly speak out about the dangers of long COVID in underserved communities. During the peak of the pandemic, Blacks were twice as likely as whites to die from the coronavirus, and many other Black people, like me, were receiving false-negative test results with lingering symptoms.

When we made new discoveries on long COVID in May, the national media did what they always do: they put white, affluent women at the forefront of news stories, implying that they were the only ones affected.

When I decided to give my first New York Times interview, I wanted to change the narrative of who became ill as a result of long COVID.

I knew my testimony would be powerful because I was neither white nor wealthy, and it didn't get much more obvious who this virus affected than that.

I testified alone, but I mentioned the brilliant, insightful, and remarkable Black women who suffered alongside me, and I openly expressed what we needed: doctors who believed we had COVID-19 even if PCR tests could not prove it, employers who would cut through red tape when we presented our illnesses, and disability benefits that allowed us to pay our bills.



I ached for Cynthia, a new friend who had been racially profiled at local D.C. medical facilities while trying to be treated for COVID-19, and Candace, who was gaslit for months after doctors told her that her months were up, even though my own life was falling apart around me.

Before her death, the bright young woman wrote her own obituary as a testament to her compassion for others suffering from this condition and a haunting reminder that America's health-care system does not move as quickly as it should for Black women.

I had no choice but to tell everyone about our situation because who else would?

Regardless of how many times white people have profiled me for their stories, no one is better suited to tell my story than me.

I considered canceling my testimony because I was suffering from crippling brain fog and an overactive nervous system just hours before, but then I remembered that my Mama had recovered from a stroke 30 years earlier.

I may never fully recover, but I will always be known as "Sandra's daughter" — strong, resilient, and persistent.

Vice President Kamala Harris asked us to consider the health disparities revealed by COVID-19, as well as those that Black women faced prior to the pandemic.

I wanted to show that the women she described were real.

We are not a figment of our imaginations.

***
Perhaps my truth will help to set us all free. And what I discovered after my testimony — with Rep. Anna Eshoo (D-Calif.) calling me “passionate” and others praising my boldness — was that many Congressional members and leaders were interested in my truth because it was theirs, too. For more than five hours, they shared stories of hopelessness as they watched children, close friends, and aides who had died.

Perhaps this will lead to more diverse and inclusive research opportunities for Black people with long COVID, as well as repurposed medications to aid in the treatment of the condition's growing list of comorbidities, such as diabetes, mast-cell activation, and hernias.

Following the hearing, the Centers for Disease Control and Prevention announced that guidelines for doctors and patients with long COVID would be released soon. The CDC is expected to include symptoms and testing measures that better tell our bodies' stories of the battles many of us have been fighting since early last year. This guidance will validate patient experiences and aid in properly coding and tracking.



It's a positive step after many patient advocates and support groups demanded these changes months ago.

Dr. John Brooks, the agency's chief medical officer, said my words struck a chord with him.

How much so remains to be seen as America's most trusted and cited health agency prepares to face one of its most difficult challenges yet: providing safe, equitable, and timely health information to all long COVID patients and their health care teams.

“I am one of the Black women who are now unemployed, homeless, depressed, and have broken bodies.”

Congress didn't need to hear me tell another story of victory — fought and won. long COVID is a battle I'm still fighting, and I couldn't afford to lie about it for the sake of my life — and my pockets.

Chimére L. Smith is a middle school English teacher in Baltimore whose life was turned upside down in March 2020 when she was infected with COVID-19 and suffered from the long-term effects of long COVID. Since June 2020, she has used her involvement in grassroots long COVID support groups and strong media presence to educate the public on the importance of including Black people in long COVID research and treatment.

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