Coming down with Covid-19 on March 22, 2020 completely altered filmmaker Chimére Sweeney’s life. A Black middle school English teacher in Baltimore, Maryland at the time, Sweeney was shocked to find herself disregarded by doctor after doctor as she pushed to find answers when she was still sick weeks, months, and then years after infection. Even more disturbing was connecting with other Black women with Long Covid experiencing similar mistreatment.
Long Covid forced Sweeney into an early retirement and forged her into an activist. Now based in Poughkeepsie, New York, Sweeney is in the early stages of creating Black and (Un)Believed: Finding #LongCovid Care Through Ancestral Care, a film about the experiences of Black Americans with Long Covid, and the challenges of being chronically ill, disabled, and ignored by the health care system. She has crowdfunded nearly $16,000 out of a goal of $500,000, is working to secure grants and more community support to complete the film’s budget, and casting participants and hiring crew members.
Journalist Lygia Navarro spoke with Sweeney about her vision for the film, racism and anti-Blackness in advocacy spaces, and connections between surviving trauma and Long Covid. This interview has been lightly edited and condensed for clarity.
Lygia Navarro: What do you want to achieve with the documentary?
Chimére Sweeney: Black people have an overwhelming amount of fear advocating [for their health]. It’s also resignation: “I know how the medical system looks at us.” I want to change the narrative of fear.
My goal is to remind us that, even while enslaved people in America, [African-Americans] had already been striving to achieve agency with our bodies. In my research, I’m learning about [enslaved] women who found creative ways to protect their children, ways to protect each other. Even as enslaved – and then as freed – people, we were creating hospitals, creating medical procedures, creating vaccinations. Things that showed our advocacy.
LN: Why is it necessary to make this film?
CS: I want people to meet real Black people navigating Long Covid and/or ME/CFS [Myalgic Encephalomyelitis, also called chronic fatigue syndrome] – they’re mothers, they’re wives, they’re part of the LGBTQIA+ community. Black men have been largely forgotten in this conversation. They’re [all] trying to figure out how to get the best health care.
My goal is to teach Black people how to engage in advocacy, and to define Long Covid for those in the Black community who may not know what it is. It’s imperative, for us to get the care we need and deserve.
LN: The word unbelieved – I’ve heard in reporting that Black folks and Latines do not necessarily realize that they have Long Covid. Doctors may have discounted them. Their communities say, “Oh, you’re just getting older. You’re just tired.” How serious do you think that problem is, of folks not believing themselves that they have Long Covid?
CS: That’s a pervasive problem… I have seen people develop these weird symptoms that I know so well. Before this, y’all were pretty healthy. I have to do a dance to say, “Hey, maybe think about going to the doctor and discussing Long Covid.”
When we continue to perpetuate anti-Blackness, it devoids us of the ability to educate people about what’s really going on. There’s not a lot of knowledge about Long Covid. People pretend they don’t have the money to educate. That’s why I wrote that letter to [Senator Bernie] Sanders [urging him to include a focus on Black people with Long Covid in the Long Covid Moonshot bill].
LN: Could you talk about your experiences with being unbelieved?
CS: Today, I was going to make a call to my psychiatrist and my therapist to talk about the feelings that come up each time I write my film’s title out. For about two years, I have been fighting the PTSD, sadness, hurt, embarrassment, humiliation of all I experienced. I get chills – I cannot believe some of the things I experienced.
Four years ago, I was at Johns Hopkins emergency room. [Beforehand], I had to crawl to the bathroom, try to stand up, take a shower, dress myself as best I could. Even though the brain fog was so heavy, I had to remember my name, my social [security number], the type of health insurance I had. I will never forget the meticulous steps I had to take to prove how sick I was. Only to have all of that dismissed. More than once. More than twice. More than five times. More than 10 times.
Every day in the dark, I was on my phone, writing down every symptom. Lights burned my eyes. Sound burned my ears. My brain felt like it was on fire. I was able to show medical professionals my symptoms, and they would say “Go home and rest.” That is the worst thing that’s ever happened to me.
That broke my spirit. Changed how I saw humanity. That was also my first real experience with racism and discrimination and with being unbelieved, with being humiliated on that level. I had been living at a level of privilege: I had insurance. I was a teacher. I’m educated. And you’re like, “Oh, I got all these things working for me.” Only to be sent home, left to die.
That’s why now, even four years later, I still experience nightmares. Flashbacks. I can’t even show my husband pictures of 2020 without having a complete meltdown.
I’ve definitely read a lot about trauma. I [grew up in] an abusive home, too. When I feel triggered, I don’t believe in pushing things inside.
LN: Can you tell me about some of the folks who are going to be in your film?
CS: My friend Brooke [Keaton], she was fighting for her disability insurance. This is somebody who’s worked, paid into a system, had to stop working because she got sick. Our political system sets us up to be disbelieved. I cannot believe that any agency will look at Brooke, or me, or whoever else and think to themselves, “We don’t believe you.”
I’m hearing all kinds of stories. My friend Myiesha, she just had to drive a long distance to get care. And these [doctors] are people who are like, “Oh, no, it’s not that bad. Just live with it.”
Roma-Jerome Jackson, I really want to interview him – I want them to be a part of it. He’s a teacher in [Los Angeles,] California. Right now, they’re fighting schools to acknowledge that Long Covid is causing students to become disabled.
I want to include some members of Margot [Gage Witvliet]‘s [BIPOC women’s support] group. She’s done an incredible job of keeping Black women and BIPOC women talking for the last three years.
I’ve met an incredible amount of people who I just find brilliant, and I figured, what better way to kind of get those people all together and hear their thoughts than to make a movie and include them on my team? In my documentary, I staff what I see in the world. My goal is to employ disabled people, members of other communities.
LN: In hearing you talk, I’ve been reminded of what folks say: at work, people of color have to be twice as excellent [as white people] to be seen as average. You’ve had to be twice as dedicated to getting yourself listened to, just to be able to get kind of listened to.
CS: I think about that all the time. It never gets easier to process. Sadly, we live in a society that’s poised to silently perpetuate anti-Blackness.
I think it’s still hard for white people sometimes to really understand the greatness outside of them [within people of color]. I’ve had so many people thank me for my advocacy, or tell me, “You speak great!”
LN: –groans-
CS: Or, “You tell a great story!” Or, “You write so well.” As if that isn’t me. I’m like, “I’ve always been her.” Let’s never get that confused.
LN: Data clearly show that Black folks and Latines – especially women – have the highest rates of Long Covid nationally. But if you look at who gets attention in the Long Covid advocacy landscape, it’s mostly white folks. What’s it like to experience this discrepancy in representation versus the reality of who is living with Long Covid?
CS: The first two years, I was getting caught up in ego: “Oh my God, all these white people like me. People are in my inbox. People are asking me to be a part of this, and I’m coming to these events, virtually. And I’m the only Black person.” Then around the end of 2022 going into 2023, I started to [notice]: There are no Black decision-makers. No Black person in leadership of finances. These campaigns are still super white.
[When I was involved with advocacy organizations, there were] times I wanted to talk about race. I wanted to have sections of their websites directed and focused on people of color. “Not right now. We don’t have time.” Or, “We don’t have enough money.” These are legacy organizations that by way of government funders, private donors, they are getting money – and still perpetuating anti-Blackness.
LN: Did I understand correctly from your press release on anti-Blackness in Long Covid advocacy that you have pulled back from being part of a lot of organizations because of this?
CS: Absolutely. And that’s a risk financially because, as a consultant, I was making pretty good money. But who was representing me at the top? You get millions of dollars for you to talk to the same white people you’ve talked to for 30 years.
Any company I work with from now on, [I first ask] how much money are you using to promote, or to investigate, and to really add on with Black and Latin representation? And, if you’re not: start there.
Any company I work with from now on, [I first ask] how much money are you using to promote, or to investigate, and to really add on with Black and Latin representation? And, if you’re not: start there.
Chimére Sweeney
LN: I was following what was going on with you and the virtual Long Covid and ME conference Unite to Fight in your posts, when you critiqued them for lack of Black and BIPOC representation. Can you give readers a quick summary?
CS: I was on Twitter [X] one day and saw this Unite to Fight Tweet looking for moderators for the conference. I reached out to one of the organizers without doing a lot of research. And then I looked on the website. And I was flabbergasted at what I saw: a beautiful website, but ain’t a Black person on here that’s going to be featured as a speaker.
So I wrote them again and I said, “What’s your plan on including more Black representation?”
The response was, Oh, it’s so hard to find people, and we are still scheduling people, and we can’t tell you who else is coming. That was three weeks before the conference.
So I got on Twitter and I was like well, let me [critique the lack of representation] publicly. And then all the vitriol came. So many other people came in and tried to convince me why wanting Black representation just didn’t make sense. Telling me I did not contribute to their calls for contribution. Me asking you what your Black representation looks like is a contribution.
LN: Didn’t they also threaten legal action [– for libel for saying that they had raised a lot of funds and weren’t including Black people in the conference]?
CS: Yes. They tried to scare me. And they almost did for a second. I was like, “I’m not going to let y’all off the hook for this.”
I hope that was a learning experience for them, and for American Long Covid and ME/CFS advocates and nonprofits.
LN: What responsibilities do white people with Long Covid have in this?
CS: I really felt like, damn, why aren’t more white people talking about this? People who champion me, the minute I said anti-Blackness, it was like, “Oh, I can’t.”
I had cried to my husband. Then I decided to leave it alone. I made my point. I went to bed one night and woke up to a whole slew of people supporting me – retweet after retweet. I wasn’t expecting it. It was amazing.
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Lygia Navarro is an award-winning disabled journalist working in narrative audio and print. She has reported from across Latin America, North America and Europe, and is an editor with palabra, the multimedia outlet of the National Association of Hispanic Journalists.
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