Rise Up!

Chimére’s Journey Elevating Black Voices with Long Covid

Chimére L. Sweeney, 41, worked in many professions throughout her life. However, teaching in Baltimore City Schools was both her favorite and the one she was most proud of. For five years she had taught middle school. She adored her students and thrived in the high-intensity atmosphere. She knew it was an environment that many people struggled to thrive in; many people lasted a couple years, a couple months, or a few weeks. “I loved my career!” she told me, describing the joy she found in the classroom and the comradery she shared with the other teachers. “I loved who I was at that time.” 

“I lost who I thought I was,” Chimére continued, describing the greatest loss from her Long Covid illness: her identity. The last time she was in a classroom was March 12, 2020. In a profession where most people burn out, it wasn’t burnout that got Chimére. It was COVID-19. 

Chimére smiled and shook her head. A serial educator, she looked at me and said, “We as Black women hold onto our achievements. My Oscar was telling people that I was an award winning teacher. I’ve had several jobs. But teaching at that school was my life. And I lost that. 

And with losing that I lost my coworkers who became friends. 

I lost social groups and church members. 

And people who don’t understand. 

I lost good healthcare. 

I lost my mind at one time. 

I lost the benefits that come with saying I am a teacher. The validation that I, as a Black woman, in her late thirties was doing something to benefit the community. I lost it.”

When she first got sick, on March 12, 2020, Chimére felt crummy and pushed through. The next thing she knew, the governor shut things down in Maryland. It was on March 17^th when she started to feel the fatigue set in. By March 22, a Sunday, she realized she didn’t have the strength to visit her aunt in North Carolina. Her throat burned with a prickly sensation. She thought to herself, this is a serious cold!

“Like many of us with Long Covid, we did not follow that script that the government was putting out. We didn’t follow those symptoms. But we were sick as hell,” she said. Like many people in those early days, Chimére was never offered a test for COVID-19. She was too young. She was too healthy. She didn’t work in a hospital.  Not having a positive COVID-19 test is common for many people living with Long Covid who were infected in the first and second waves of infection. And those Long Haulers remain the sickest, four years later.

For part of that time, she hired a health advocate and paid out of pocket for someone to assist in navigating the waters of the health system. It was expensive and didn’t get her where she needed to go. However, Chimére knew that, as her health deteriorated, she was going to struggle to get access to good medical care as a Black American woman. History was not on her side. 

Like many women living with complex chronic illness, Chimére brought research and hypotheses to the clinic with her. It was Chimére who determined what was the name for her intense pain in her head, neck, and spine, after several clinicians had dismissed her symptoms. Reading through medical research, she realized her pain mirrored what she’d read about occipital neuralgia, a condition where the occipital nerves that run through the scalp are injured or inflamed. The headaches are severe—feeling like piercing, throbbing, or shock-like pain through the neck, around the back of the head, and behind the ears. This pain was debilitating but finding a term for this pain felt like a relief. When she suggested this diagnosis to the doctor, he looked at her indignantly, dismissing her by burying his head in her chart and scribbling in silence.  However, she knew he wondered if she might be right only because during her next neurology appointment, a different doctor said, “You’ve been diagnosed with occipital neuralgia?” It was only when she started to get treatment that some of the pain alleviated. 

It wasn’t just the pain in her head that caused Chimére to spend eight months shut inside a dark room and nearly bed bound in 2020. She had intense pain throughout her body. Her brain infection brought with it hallucination, a deep depression, and suicidal thoughts. Eventually, her left eye began to blur. It wasn’t until a doctor took a deep look into her eye when someone finally agreed that something was wrong with it. Eventually she would have two cataract surgeries – in both eyes – to fix it. 

Finding a Diagnosis

Chimére struggled for two years to get someone to believe that she was sick. The pain that shot through her neck and curved around her head was frequently dismissed and denied—you have a headache!  You have anxiety! You have fibromyalgia! She was told. 

In 2022, Chimére wrote in a CNN Opinion essay, “I was used to this treatment; most doctors I spoke to since I had become ill – many of whom were White males – didn’t believe I had Covid-19, preferring instead to assume I had a psychological issue. Some suspected drug use or insisted I was being abused at home. And others seemed to roll their eyes because of the number of Covid-19 tests – both antigen and antibody – I had taken, all of which were negative.”

It was a Black woman at Johns Hopkins who finally believed her. Although, because of her position as a physician in training, the doctor hesitated to diagnose Chimére. Long Covid diagnosis remained contested at that time and the young doctor wasn’t sure what her superiors would think. Chimére wrote to the attendings and asked for further consideration of her diagnosis. She knew advocating for herself was the key to finding real support.  

The team of doctors she met at Johns Hopkins University Hospital finally put Long Covid in her chart. This was two years after her original symptoms set in. Chimére had started to worry because she wasn’t working. Thankfully because she’d worked a full five years in Baltimore Public Schools, she had access to disability long term. And, since she is a savvy planner, she had invested in disability on her own, just in case. This is what kept her afloat as she navigated more than 24 months without a diagnosis that could enable her to apply for Social Security disability. 

The worst was behind her and she could focus on healing from her physical, psychological, and medical trauma. Today, she says she’s probably functioning at about 65% of what she did when she was a beloved teacher in Baltimore City Schools. She could never do that job again, but that hasn’t kept her down. She’s found the love of her life, Taurean Sweeney, got married, moved to New York, and doubled down on her Long Covid advocacy for Black women. 

Activism

I was curious about how white supremacy seeps into these spaces. She said, “It’s so sneaky and relentless. People don’t even know they are pressing the involuntary button of oppression every time they get turfy.” I nodded, realizing how many lines are drawn in the sands of social media. She continued, “When people fight, when I watch what people want to do, and what they’re fighting for, clamoring to get money from the government that has determined the pandemic is over, prematurely, of course, I have to wonder, do you see my face and colleagues like me in your fight? When I see my fight, I see all races, all genders, all people.”

Her devotion to elevating Black women’s recognition and understanding of Long Covid was the focus of a recent open letter she published. In “Dear Black Women: A Letter to My Sisters with Long COVID”, Chimére wrote, “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.”

Chimére explained that “it is my responsibility to promote the inclusion of Black women with Long Covid into pandemic history.” She refuses to be part of Long Covid advocacy spaces where there are no Black women with Long Covid stories featured. White women’s narratives still dominate Long Covid media and advocacy spaces, much like they have for ME/CFS. She said, “You can’t possibly think that it’s ok to exclude Black women with Long Covid. And you can’t tell me that it’s only White women who suffer with Long Covid. That’s why, in the early stages of my illness, with my one good eye, when I was watching CNN and listening to it to try to get information, I kept seeing all these white people sitting around and talking about Long Covid. I'm a black woman dealing with the shit. I know I'm not the only one, but you don't. For a long time, I didn't see Black women portrayed.” Chimére shook her head and explained how this all-white collective of senators listening to her fellow patient advocates speak about their Long Covid experiences, this whitewashed audience, is “symbolic” of advocacy spaces. 

Chimére’s next advocacy journey will be making a documentary film: She: Black & (un)Believed.  I wanted to share a bit about this documentary with my readers in case people are curious to learn more, and possibly give a donation to her fundraising efforts. 

From Chimére:

I am pleased to share that I am on a mission to shed light on a demographic that has been severely impacted by the Covid-19 pandemic, yet their stories remain unheard — Black women. My film, She: Black & (un)Believed — a Black Woman’s #LongCovid Documentary, is in pre-production and aims to unveil the humanity of these women by honoring their experiences, struggles, dreams, and joys. We will also be having conversations with an array of patient advocates, health organizations, social and disability justice leaders, doctors, and politicians who have championed bills for Long Covid research and treatment. 

Be 1 of the 1000 to Ensure Black Women’s Inclusion in Long Covid History! 
See Rough Cut Trailer Now.

We will introduce you to four women in major cities — including Baltimore, Charlotte, and Los Angeles — who have battled Covid-19, suffered from Long Covid, and endured many hardships since the start of the pandemic. We will also explore ME/CFS’ impact on Long Covid. 

Our team will consist of Black women, members of the LGBTQIA+ community, chronically ill and disabled persons, and other people of color. We are driven by lived health experiences and a deep understanding of the discrimination and racial oppression that often limits Black women's ability to receive equitable health care, treatment, and social service benefits. 

We have raised $9,500 in about 15 days and would be grateful for any support you can provide. If 1,000 people donate $50, we would reach our starting goal of $50,000! You can also give here or here. If you have any questions, feel free to reach out to us at chimereladawn.com. If I can share more information with you or your organization, please let me know. 

Thank you for standing with us in this mission to bring attention to the Black Long Covid Experience. Learn more about my activism here and here.

Chimére L. Sweeney, 

Director of She: Black & (un)Believed — a Black Woman’s #LongCovid Documentary

Founder of The Black Long Covid Experience, LLC

Long Covid Activist and Writer 

www.chimereladawn.com

202.384.7810