Newsletter   /   Dear Black Woman
Chimére L. Sweeney


December 18th 2023   |   

8 min read

Dec 18 2023

8 min read

Dear Black Woman:
A Letter To My Sisters With Long COVID

Dear Black Woman with #LongCovid —

Girl ...

I know this thing hurts. What you feel today is a far cry from your normal life. In our world, we are used to managing everything – whether we want to or not – because if we don’t, we risk losing our careers, achievements, and opportunities. We experience all sorts of pain and still keep it movin’.

This is not that.

Writing you this letter is not how I imagined we would meet. But three years ago, when death echoed its hollow voice in the chambers of my body, I thought of you, and knew you would need this kind of love, too. The kind that sits next to you with no judgment as you try to make sense – on the days you can – of what Covid-19 is doing to your body. Love that is unbeholden to what you do, how you look, or how the world treats you.

This love is wrapped in familiarity and protection. It arrives with a keen awareness of your struggle. I am you. And I, too, am living with what you are living through. Together, we are Black women living with Long Covid.

I thought of you as I wished someone had thought of me. Unfortunately, I did not have a sister-friend to sound the bell of warning as our ancestors did on their trek to freedom. By the time I realized the danger of Covid-19 and its frightening sidekick, Long Covid, it was already too late.

Ironically, at 41, I am now considered a wise elder in the Long Covid community. Had I never contracted Covid-19, I would be a middle school principal in Baltimore. Instead, many long-haulers look to me for answers and inspiration. They await new updates on treatments, research findings, doctors, and advice on navigating relationships and work. Most times, I can help. Other times, I am just as confused and drained as we all are.

I write this with earnest hope that one word or line motivates you to find your voice, or helps clear the path for you.

Tell someone.

It took me nearly four months to disclose to my family that I suspected I had Covid-19. Shame and fear kept me from telling my family how sick Covid-19 initially made me. I did not know enough about this new condition to answer the questions I assumed would ensue if I shared what I was feeling.

You know how this is. In my dizzying haze, I felt telling my family I was too ill to return to work would mean I was a failure. I clung to the pride I heard in their voices as they told others I was an award-winning teacher. How heartbreaking it is to assume that our contracting this stubborn illness could be met with disappointment. This is what happens when you live in a world that places you at the very bottom of everything.

Sis, please tell someone you love that you are living with this horrible secret. Your very life depends on creating a trustworthy, dependable support system of family, friends, and even other patients, as Covid-19 tries to work against you. You will need these people to believe you, transport you to appointments, and perhaps even serve as your power of attorney if you are unable to manage your medical and financial information.

Today, there is literature to read and listen to as you search for medical treatment. There are social media friends and online support groups who only want to help you. Maybe you will even find resonance in the written by us. Maybe you will even write one yourself.

Decades from now, your voice and experience could be the answer to someone’s prayers.

Fight for your life.

Doesn’t it seem like we are always fighting to exist in America? We fight to wear our hair the way we choose, to marry who we love and give birthor not. We fight to be paid as much as white men and women who perform the same roles. And just like everyone else, we long to arrive home safely after working, shopping, or being with friends without being stopped by law enforcement for simply being Black.

We are never good enough to be validated by white supremacy. But, no one can ever say we are not strong enough. We follow a long legacy of Black women – some of whom had no idea how far their power would reach. Some died fighting. Others’ stories would go on to be told for decades to come.

I was never a fighter. Before Long Covid, I was content to let life happen to me. I did not challenge what doctors or politicians told me. I believed my silence honored them. Being a well-behaved Black woman was my badge of honor.

Something in me snapped the last time doctors told me they could not help or treat me. I called local politicians, emailed doctors, and contacted journalists. I repeated the horrific details of being racially profiled as I sought treatment months after my initial Covid-19 infection. There were days I wanted to quit. I could not stop, however, until I had laid the foundation for you to receive swifter, more equitable medical care, and pathways to complain if you did not.

Accessing medical care and government-issued financial support will not be easy. Like an action movie’s antagonist, you will be racing against every clock to save yourself – meeting deadlines to prove the scope of Long Covid’s impact on your life. The heaviness of fatigue and rejection will overshadow your few wins. Some days, crying and screaming is all we can do. That’s ok.

As much as you can, just keep on keepin’ on. No matter how difficult it is for you to believe it sometimes, your life matters. Continue disrupting systemic medical racism and discrimination until you convince yourself so strongly that no one can stop you – not even you.

Live your best #SoftLife.

If you are like me, resting isn’t something you’re used to. When I was teaching, I worked ten hours a day, met friends at the bar, transported students to sporting events, and maintained relationships with romantic partners, often to the detriment of my overall health and personal needs. Meeting others’ needs was my top priority. Placing myself on the top on any list felt uncomfortable and unnecessary. Then Long Covid arrived, and punished my efforts at resilience with post-exertional symptom exacerbation, or “crashes.”

Experts attribute our difficulty choosing ourselves to the scars of slavery. Psychotherapist Natasha Reynolds Watson explains that, “Black folks were used as labor and were only as valuable as our ability to work…the generational legacies around needing to work to survive still exist today.” We are still more likely to experience discrimination when we seek care for our ailments, so perhaps it is no surprise that we sometimes choose to forgo that care altogether.

Over the last year, many Black women have been reimagining a new type of strength, rejecting the idea that survival must mean masking our pain. Many of us have been investigating the #SoftLife, instead. I have adopted such a protective care routine for myself that I now consider myself the Black Queen of the Long Covid #SoftLife. And you can become her, too.

I realized that the only way forward would be through pacing, rest, and a gentle embrace of my body’s needs. So, I nap at the same time every afternoon, regardless of the world’s demands. I pause to sit after driving or cooking, never rushing onto the next task as I once did. I move slowly and methodically through my day, building in pockets for rest and breaks around the exertion, because these acts of pacing are now the only way I can survive.

This all gets easier the more you practice. Adjust your schedule so that it accommodates only you. Use your phone’s alarm clock, a large calendar in your room or office, and Post-it Notes to remind you to sleep, break, and reduce your screen time. Settling into stillness or meditation helps me maintain calmness when inflammation runs amok in my body. Rest like your life depends on it. It does. Ask for help from your support system.

You may never be who you once were. I know I never will be. Perhaps, like me, you will eventually appreciate this new version of yourself as the remix your playlist needed.

Long Covid will forever be a part of our story. The question is, Black women, how will you tell it?

I send you all the Black Girl Magic you can stand. I am here for you.

In solidarity,

# Community # Black # African American # Women
Chimére L. Sweeney

Activist, Consultant, Author

Chimére L. Sweeney is a Long Covid activist, consultant, and author. She became recognized for being one of the first Black women to confront systemic racism and sexism in medicine early on in the pandemic. She is a proud graduate of Morgan State University. She now lives in upstate New York with her husband, Taurean. She enjoys reading, writing, and pet-sitting for friends and family.