Opinion: Doctors didn’t believe I had Covid-19. I found a way to listen to them

Editor’s note: This personal essay is part of the CNN Opinion series “America’s Future Starts Now,” in which people weigh in on how the nation’s biggest issues have affected them and experts offer proposed solutions. Chimére L. Smith is a former Baltimore middle school teacher who has been suffering from prolonged Covid since March 2020. He is now an advocate for families with prolonged Covid. The opinions expressed in this comment are his own. Read more reviews on CNN.


In June 2020, I laid in bed, ready not to cry again.

It was Friday morning, and after spending the night in the hospital, waiting, I had been fighting back tears since I got home. As I waited, I could hear the doctors and nurses breeze through my door, but it took them hours to get in. I thought I knew why; I had been there before, at least half a dozen times.

Each time I wanted the same thing: relief from my lingering symptoms of Covid-19. This time was no different.

The nurses greeted me politely, but looked at me in disbelief as I told them, once again, that my brain felt like it was on fire. Later, the doctors would come in one after the other.

First, a doctor to check my eyes because I had inexplicably lost the sight in my left eye a month earlier. Then the neurologist did another cognitive function test, which he said I passed with flying colors. He asked me to move my fingers and toes, but he didn’t probe for information about the fire that threatened to melt my brain, and he didn’t ask why I couldn’t remember my name for days.

Finally, the emergency physician arrived. He was the one I feared the most, because he was usually the one who said, “We’ve checked all your blood tests. We didn’t find anything. We will send you home.’

I was used to this treatment; Most of the doctors I spoke to since I got sick (many of whom were white men) didn’t think I had Covid-19, preferring to assume I had a psychological problem. Some suspected drug use or insisted that I was being abused at home. And others seemed to roll their eyes at the number of Covid-19 tests (antigen and antibody) I took, all of which came back negative.

The pandemic was a new beast for the public and health professionals; experts also acknowledged that they were learning about the disease in real time. The fact that my symptoms were accompanied by a negative test should not have been a reason to rule out the possibility that I contracted Covid-19.

So that Friday morning, overwhelmed with pain and despair, I could no longer hold back my tears.

A few months earlier, when communities began to close for the pandemic, I was sure I had caught Covid-19. My symptoms started with a sore throat and diarrhea, but soon snowballed into an inferno: constipation, burning lungs, dehydration, stomach pain, delirium, memory loss, joint and muscle pain, insomnia, weight loss, and vision loss in my left eye. . And they wouldn’t stop.

A month of pain, fear and hospital visits later, I was at my wits end. I used to be an English teacher, but I wondered if I would ever be able to teach (today, I still can’t). My best friend had a copy of my will and knew how to handle my last wishes. I had almost lost the will to live.

Somehow I found the strength to not only overcome my physical pain, but to push back against a system that didn’t take my pain seriously. I had had enough of throwing it away. I got angry.

Driven by desperation, my brain began to fire up gathering ideas. I had to save my life. I sent a detailed email to the patient relations coordinators at the hospital that treated me. I shared my experience of increasing and not taking my debilitating symptoms seriously. I admitted that even though I never tested positive for Covid-19, I knew I had it. And I blamed the doctors for letting me get fired.

In that email, I became what I never wanted to be: a struggling, complaining black woman.

I didn’t care.

Once I started writing, I couldn’t stop. I wrote to the heads of my local city council and state representatives. I wrote to reporters, telling them about “Prolonged Covid” – a new term coined by more and more people on Twitter to describe the lingering and frightening symptoms many of us experienced after the initial viral infection. I turned to reputable neurologists for help. I even wrote Google reviews for doctors who refused to acknowledge that I had a suspected case of prolonged Covid.

A few days later, the email responses started pouring in. I cried when I read a note from a council member who offered sympathy and agreed to stand up for me. And a state representative wrote to a senior hospital official about my condition.

With the help of these politicians, I received notices from one of the hospital’s patient relations offices agreeing to investigate my case. We arranged meetings to discuss appointments with the specialists who would take care of me. Finally, I was being taken seriously, and I was going to get answers.

Conversations with a new primary care physician eventually led to my diagnosis of “post-acute covid syndrome.” Covid-19 infections can trigger inflammatory responses in various parts of the body, which contributed to many of my symptoms. With a diagnosis, I was able to get proper treatment, including cataract surgery to correct my vision loss, and was able to receive work leave and disability benefits.

Now, almost three years after my Covid-19 infection, I am doing a little better. I can cook, drive to appointments, read and have hour long phone conversations with family and friends. My will to live has been restored.

Chimére L. Smith's Covid-19 infection caused permanent eye problems.

But my new life, which includes days of pain, brain fog, fatigue, and persistent eye problems, has not allowed me to teach the students I cherished. I laugh at the money peekaboo in my bank account after all the severance benefits have been exhausted. And some days, all I can do is cry.

Being an advocate for long-term covid sufferers, especially people of color, has become part of my life’s mission. I have been able to use my experience to advocate for the long covid community and others who are not being heard in our healthcare system. But I miss the woman I was and the life I led.

In December 2020, when I was invited to the National Institute of Health workshop on the effects of prolonged Covid, I immediately said yes. It was my golden opportunity to warn the world’s leading doctors and researchers about what would happen if the medical community once again missed the mark, neglecting blacks and Latinos in communities with little access to information or treatment. Following this global debate, Congress gave $1.15 billion over four years to the NIH’s long-running Covid research.

But there’s still a lot of work to do to make health care – and long-term care for Covid – fairer. Although this virus affected black and brown people at a higher rate, I rarely saw long stories of Covid patients at the forefront of conversations about this disease. I only had to look back at my own experience to understand why: I needed to get angry enough to be heard, to challenge medical authority, to ask questions, to complain and get upset. I had to disrupt a system designed to exclude me and people who look like me.

So I’m going to keep talking, and I’m going to encourage other black men and women to talk to me.

I know firsthand how effective it can be.