Listen to Chimére Sweeney’s gripping story of resilience with long COVID. From healthcare gaslighting to finding strength in community, Chimére sheds light on underrepresented experiences in her journey toward recovery.
Chimére Sweeney, an award winning , former middle school teacher, writer, film producer, speaker, and long COVID advocate, is interviewed about her Long COVID story. This is the first of two episodes.
This powerful account details the relentless symptoms of long COVID, from chronic pain and cognitive decline to isolation and despair. Once an English teacher with mastery of language, Chimére now relies on support to communicate effectively. Chimére describes her struggle for medical validation and their experience of gaslighting in healthcare, highlighting the added challenges faced as a Black woman. Long COVID also emphasized a newfound reliance on community, challenging prior notions of self-sufficiency. Now focused on creating a documentary, Chimére aims to amplify the voices of Black long COVID patients, preserving these underrepresented stories for history.
Guest – Chimére L. Sweeney
Note: The podcast has no bias. All conflicts of interest are highlighted with individual guests.
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Episode 19 – Chimére’s Personal Long COVID Story and Advocacy PART 1 ft Chimére L. Sweeney
[00:00:00] Funmi Okunola: The information in this podcast is provided for informational purposes only. You should not use any information discussed in this podcast and related materials to make medical or healthcare related decisions. Always consult your physician or other qualified healthcare providers with regards to diagnosing and managing your medical condition. Any medications or treatments, including any discussed in this podcast, should be initiated and managed by a qualified healthcare professional
Funmi Okunola: Welcome to Long COVID – The Answers. Today’s Episode is entitled “Chimére L. Sweeney’s Personal Long COVID Story and Advocacy”. I’d like to introduce Chimére Sweeney, an award winning, middle school teacher, writer, film producer, speaker, and Long COVID advocate. Chimére is a long hauler who has worked tirelessly to bring to light the effects of Long COVID on Black, Indigenous, and people of [00:01:00] colour.
Amongst the forgotten and unheard of many, she is a woman who is to speak the truth. Chimére has been a guest panelist for the National Institute of Health’s workshop on the effects of Long COVID following which the U.S. Congress provided $1.15 billion for the NIH research into Long COVID.
Chimére testified before the 2021 U.S. Congress House Committee Energy and Commerce’s hearing on Long COVID. She has also written for a variety of publications, including a chapter in the “Long COVID Survival Guide” edited by Fiona Lowenstein. Welcome, Chimére.
Chimere Sweeney: I’m so glad to be with you.
Funmi Okunola: Thank you. Chimére, do you have any conflicts of interest to declare?
Chimere Sweeney: No.
Funmi Okunola: That’s great. Okay. So Chimére, could you tell us in your own words about your life before Long COVID and your [00:02:00] experiences when you developed COVID-19?
Chimere Sweeney: Well, Funmi, thank you so much for having me here today.
It is an honor to be here. I don’t like to do as many interviews as I did before because my advocacy has changed, and I also really am trying in this space and time to promote more Black, Indigenous, and Latin people to tell their stories. That’s what my mission is. With my Company, the Black Long COVID Experience is to really promote ways that our groups of people can feel empowered and motivated to tell their stories, but talking to you via email, I was like, I’ve got to do this.
I’m glad to be here today. It’s so interesting when I think about my life before COVID because I’m doing observational research in a way where I’m trying my best not to be as judgmental about people who strive for normalcy before 2020, and anywhere I am, I’m wearing a mask, and I’m just being very protective of my own space. I’m thinking to myself, you know, it’s so ironic because I was them before 2020, before March 22nd, 2020.
I operated in the same vein. I thought that I was invincible. I didn’t think about having any spatial protections to safeguard me between myself and other people. I wasn’t living my life in a way where I was thinking about community as much as I do now, and that’s from a philosophical sense.
But I lived a life that, as I was sharing with my husband [00:04:00] recently, I died. During my COVID, the most acute symptoms that I faced in March through September, I would have been okay with dying because I lived my life as Americans like to say a “flower child”. I was a risk taker. As I mentioned to you off camera, I was a make-up artist. I was a writer.
I never followed the system that my family thought that I should follow. Up until a certain point, I never had a job with benefits, and as a woman growing up in a Black family, that’s one of the things you learn. Get a job with benefits and do it like this and do it like that.
I never followed those rules as much, but I had friends. I was very sociable, always have been. People never believed that I’m an introvert, but I am. I’m a social butterfly/introvert. I’ve had careers that I’ve been proud of. I’ve had jobs I’ve been proud [00:05:00] of, and even becoming a teacher, that was the proudest I had ever been, and I think it was because I did get an opportunity to follow my family’s rules. Being a teacher, I was allotted with a lot of the opportunities to have benefits, health insurance, be a part of a union, and really go to a career every day where I felt such freedom because of where I arrived in my career year after year. I was the one of the most entrusted teachers and staff members at my school.
So, nobody was coming into my room, peering in to see was everything going according to task or schedule because they knew that my teacher, nicknamed by the students, “Smizzle”, they knew that “Smizzle” had it together, but I also lived in a very individualistic frame of mind, right?
Even with teaching, like I’m the best. I do it like this and no [00:06:00] one can do it better, and I only care about me, the money, cars, clothes, and all those things, and on March 22nd, as I wrote in a recent grant application, all of that thinking changed. The minute I became sick with diarrhea and this menacing, fiery back pain that just won’t go away four years later.
The minute I lost my sight in my left eye, then my right eye, the minute I was turned away from hospitals that upon me going to them prior to March 22nd, I had always held the highest esteem for the hospitals, the doctors, the staff, the minute I was turned away, the minute I [00:07:00] was told a lie or I was gaslit to the point where I would come home after each visit thinking that something psychologically was wrong with me, not just physically but psychologically, because these people were telling me that what I knew to be true about this body that I lived in was untrue, I realized that a change and a shift was happening inside of me, I realized that I needed people.
I realized that I had taken so much for granted. I realized that it only takes the particles of one particle of a virus to completely change your entire being. Even now, as I talk to you, I have brain fog trying to hold on to every word. Before 2020, that was never my issue. I’m a [00:08:00] ‘mouth all mighty’. I can talk all day. I still can, but now it’s harder to grasp onto words.
I’m making a film. I was an English teacher for five years. Words were never lost upon me, and now I’ve hired someone who I trust to read every word of my grant applications, read everything I say so that it is concise and clear, and it’s sensible and it answers the questions because my brain no longer operates in a way that was as powerful, useful, and miraculous as it used to.
So, I was healthy, but I operated in such a false sense of invincibility. I really did. I also operated as if I didn’t need anybody. Community wasn’t important to me. Yes, I worked alongside these other teachers, these other people and all of my jobs [00:09:00] and careers, but I operated most of the time like “if I don’t do it, it won’t get done”, and a lot of the Black girl mantras that we tell ourselves because society has made us feel this way, and I realized that the moment for me, the moment I came back to my home with my godmother, and I clicked that door closed because I was leaving a relationship, where I was, I call it some days I say I was dumped and some days I say I left, but for whatever reason, I was crossing the threshold back into safety for me.
I realized, oh my goodness, I need my godmother. Oh, my goodness, I need doctors, I need nurses, I need people to understand what in the hell am I going through? My life changed, but as far as physical symptoms, I can [00:10:00] say constipation, diarrhea, headaches that felt like my head was splitting into four, like I mentioned the back pain, hip pain, ankle pain, toe pain, the finger pains, the blindness, the vision, the floaters in the eyes that are still there even today, the lack of memory, not being able to make word associations, and not writing proper sentences, not being able to look at an item that for almost forty years that I knew as bread, and now I look at that item and I say, “um, um, um”, and an irregular menstrual cycle, black blood. People don’t know until they see themselves bleeding out of veins, wherever. Black blood, and even the phlebotomists and stuff are like, “Oh my God, I’ve [00:11:00] never seen blood this dark!”. Unless you see yourself bleeding and it’s dark like that, and coming out of your veins, unless you are planning your death, unless you have suicidal ideation, sorry, trigger warning, unless you are, you’ve been to doctor after doctor after doctor at esteemed internationally recognized hospitals in Baltimore, Maryland, unless you’ve done that, you don’t know to think as if you need people, as if things have changed.
I needed all of that. I couldn’t walk some days. I had to crawl to the bathroom. I was having panic attacks. I couldn’t swallow. I couldn’t drink water. I couldn’t drink Powerade. My Godmother was like, you need to eat something, drink something. How? I couldn’t process food and water. I couldn’t even think [00:12:00] about eating or drinking because the thought of that was too painful.
I had to give myself an enema one day in my bedroom because I could not go to the bathroom. I knew that if I did not dispose myself of this waste, I would die – humiliation, depression. Men, white men, men, God bless them, all races and ethnicities of men looking in my face and telling me that I was fine, but I was just psychologically unwell – that would diminish your spirit, and it’s what happened to me.
Funmi Okunola: After being [00:13:00] gaslit on numerous occasions in your local emergency room, can you please explain to the audience the remarkable efforts you made to be heard and treated seriously?
Chimere Sweeney: I can. I love telling this story because I’m a spiritual woman. It just was such a spiritual awakening. The day I decided to talk to anybody who would listen was the day I was sent home after I begged these doctors and nurses to admit me. I was like, please just admit me for a couple of days so that you can watch what’s happening, so you can know what I know, because I know I cannot be the only Black woman in this room, in this hospital room that was being left for hours and hours and hours.
At that time the hospital rooms were like cold, cold, because everybody was [00:14:00] really, really worried about keeping it super cold to fight the virus, and they would be like, “No, you don’t need to stay with us. You’re fine”. So, the last day I was turned away I couldn’t see out of this eye driving home because still, still at that moment, still like I need people.
But then my thought for me was “If I drive myself to the hospital and I die there, then at least my car will be there, and my Godmother and my emergency contacts would know I’m really here because I’m sick, sick to death”. So, I drove myself back home after they turned me away. You know that was like the end of June, early, early July, and I thought to myself, I said, “You know what, I’m going to take my life tonight, today, whatever”. Just at that moment, my best friend called, and we talked about it back and forth, and she said, “Wait a minute, hold up. [00:15:00] You’re not going to do that”, and I was just telling her all the reasons why I need to.
Then in that moment, as I’m talking to her, I said, “But you know what I’m going to do before I do that, (because she had said no) come try to convince me, and you know what, if I’m going to die from this, then I have got to die a fighting poet”. Claude McKay said, ‘Let not be’… I can’t remember the rest of it.
I was like well, if I’m a die then I’ve got to do it like a warrior! To actually with, eyesight out of one eye, let me just put my fingers and write these emails to local politicians, to doctors who I had seen at that same hospital, right, these prolific articles [00:16:00] about the neurological impacts of Long COVID, or excuse me at that time, just COVID.
Let me write to this state delegate. Let me write to this person, this person, this person, and when it’s running, I couldn’t stop. I can’t think about dying because I kept thinking to myself at that time that I was still so convinced that I was going to go back to being a teacher.
But what I thought of the most, I said, “Oh, my goodness. I’ve been in these hospital rooms thinking like this, experiencing these fifty plus symptoms and my babies, my little babies that are eleven to fifteen years old. What is this telling their parents, these same things and going to the hospitals, and they’re being treated worse than I am because these are my babies who are not adults, so they don’t know yet how to articulate”. These are my babies in Baltimore, Maryland, an urban Black city where a lot of [00:17:00] people doubt their ability to do anything, even articulate, although they are some of the most articulate young people that I’ve ever met, and I said, “I can’t have this happen to me and us. Let me write these people who are supposed to protect me, work for that coin”. So, I became a constituent of these politicians who say that they took these jobs for me, and I made them accountable to that because I was like, I’m showing, not doing what I’m supposed to do.
I’m coming to these… You said, when I get sick and I feel sick to come to the hospital with my insurance card, see, fool me. That’s the thing they tell us. They tell us all the time how to be good. Black women and girls, the society says, be good at being Black. A Black woman, a Black girl. Don’t be too loud, don’t be too rambunctious. Don’t have an opinion. Don’t be too [00:18:00] smart. Get a job, get some benefits, and that’s the most that you are allowed to do. But I said, “No, I’m away with all of that, and you still weren’t listening to me. So, who men like, I really know how to be at that time, Chimére La Dawn Smith. You all know who I really am!
A writer, a teacher, a tax paying community member. A person who does more work in the community than you all will ever do, because unlike a lot of people, I sit in a classroom in the poorest part of Baltimore and teach every day, and I started to be critical to say, I’m concerned with how you are treating me as a Black, career, tax paying citizen.
I wonder how you’re treating other people who may not have the privilege that I have, and then all of a sudden [00:19:00]I thought less ‘a’ dying than I thought laughing! It’s not funny, but I’m laughing because it’s just how ironic it is, and even in that moment, how iconic. Spirit and universe and all that stuff works. I thought less of dying and I thought more about saving myself and prayerfully hoping to save somebody else.
That’s how I fought the gaslighting. It wasn’t easy because I girded myself up with so much defense. I put on so much – I became this defensive person that I almost didn’t like, because I was like, I’m really having to tell you all that you’re not going to treat me the way you thought you were going to come in this room and treat me.
Sometimes I’ve had to apologize to doctors and say, “You know what, look, I apologize for my tone, for my presumptions about you and what you’re going [00:20:00] to say, but I’ve been through too much to let anybody from 2020 until now treat me as if I’m just some patient without any agency”.
Funmi Okunola: So, I’ve heard Long COVID called the Corona Coaster. How do you cope with the daily challenges posed by this disease? For example, one day well, the next day in pain and extremely fatigued.
Chimere Sweeney: You know, now I understand about the coaster right, and I know some of the people who use that term, but for the first year and a half to two years I don’t know what it’s like. Not I don’t, I didn’t know really honestly what it was like to really have many well days
Funmi Okunola: Hmm
Chimere Sweeney: The only reason I will call it a coaster is because the symptoms would roll and bounce to [00:21:00] other symptoms. It was almost like to me, it was like ping pong, not ping pong – the pinball machines, right at the arcades where, okay, so today my head is hurting. My head feels like a change purse that’s going like this, and the pinball machine is like this, and then tomorrow, my sinus area, my mouth, my jaw, they would hurt so bad that I couldn’t even talk. Talk, speak, drink. The next day, oh, your legs are swollen. My legs are swollen. Oh, my goodness. The next day eating again. Next day, these floaters that weren’t there were back. Panic attacks, delusional moments where I was being, I was, I could see, literally still see myself chasing, running away from something that was chasing me because [00:22:00] as you know, it affects us psychologically too. Wrist pain, chest pain, ring pain, but it never stopped. It was always something every single day to the point where I almost got sick and sick of people asking me how I felt for the first two years because I’m like, wait a minute you all know like I told you before, that every day is something – oh, there’s a new rash, on my head, my scalp – beautiful black skin. That’s what I worry about, too, for Black people, people who with darker skin, if you get these mast cell rashes, our skin is so beautiful that what happens is they make marks on our skin that take forever to heal. You have to treat it, and because a lot of times people still don’t know how to treat melanated skin [00:23:00] you’ve got to go through the pills, the injections, and that stuff and it still doesn’t work. So, you really have to rely on what big mama said about cocoa butter, shea butter to even start the process, but I’ve got sixty-sixty parts.
You can look in my scalp and count the number of rashes I’ve got just because there is an overabundance of histamine in my body. So, it never stops. For me, I think about the privilege that I have too, and then sometimes I just think to myself, what would we do if we truly understood the privilege that we had and understood how to use it?
Because I thought to myself, I said, you know what? I said, the difference between me and a lot of women who had to get up and go to work, a lot of men who suffer through coughs and asthma attacks, heart attacks because of this are that I’ve got a chance to do a lot of resting. [00:24:00] That was my privilege.
After writing and fighting for my life and my ability to be home, I was able to be home. I didn’t have to report in to anywhere except for doctor’s appointments. I was able to take those symptoms as scary as they were for the first nine months, I was able to just lie because at that time people and doctors still weren’t reading about it. They still weren’t aware of the cost it was to be a Long COVID patient.
They weren’t making any connections. They were just saying, “Oh, we’ll just treat you, treat your symptoms”, but they weren’t even acknowledging that symptoms really existed, and so I just spent so much time in bed.
Funmi Okunola: So, I mean, to be honest, Chimere, that is still the case. That’s why this podcast is happening – to try and [00:25:00] teach physicians because I would say 99% of my colleagues have no idea of what Long COVID is.
It’s grossly misdiagnosed, it’s underdiagnosed, and they don’t know how to manage it. I still hear there’s nothing we can do. So that’s why all of this is happening. It hasn’t really changed. So maybe people in your immediate forum are more aware, but the majority of medics walk around maskless. There just isn’t an awareness.
Funmi Okunola: Chimére, you’re a beautiful writer. I read an article you wrote called “Could You Hug Me Longer Please?” reclaiming touch and intimacy as a Black woman with Long COVID. This is published online in “She Knows” in February 2023. We’ll have links to all of these articles in the show notes.
In the article you talk about your struggles as a single woman during the pandemic, isolated, without being physically touched for a long period of time. I believe that a lot of people from all walks of life can relate to this experience. Could you please discuss this with [00:26:00] the audience?
Chimere Sweeney: Yes, absolutely. The relationship that I talked about did not work out. Hence me being married to my husband, Tory. But it did teach me something. Even the ending of that relationship and being in the marriage that I’m in now, I know that’s a part of another epidemic that we fight all across the world because we were already moving into such, like I mentioned before, an individualism being. I can do this. IPhones and social media and stuff are driving us like magnets to a lonely refrigerator. But COVID really did a number, a job on our ability to socialize, to [00:27:00] love, to extend a hand. It’s so interesting how we are at the beginning of a thing, right?
But then how do we end up based upon our narratives of ourselves and our narratives of society. We started off by dropping groceries off to each other. We started off making sure that we took care of each other’s needs, and then we ended up on social media more. We ended up not even being able to hug or kiss or even just laugh, so I’m the kind of person that when I laugh, and if it’s funny girl, I’m going to be like my husband, he’s so funny, and even if he weren’t my husband, just somebody making me laugh, I would be like, oh, just touch his shoulder or just touch his hand or something. But it even took that away, now we’re okay with not touching. It was two [00:28:00] years almost before I hugged anybody. Seeing my family was like maybe six or nine months after I got sick. I wasn’t hugging anybody; I wouldn’t hug anybody.
Chimere Sweeney: I remember the first time I hugged my mother, and I had to sit in my car and cry because I was like I will never take for granted a hug again.
I remember when I went on that date which was the first date I had gone on in over two years. He reached out for a hug, and instead of playing like coy on the first date, and I even asked for consent. I said, “Oh my goodness, I don’t want to make you feel uncomfortable. If it does, please let me know, but please, when you hug me, hug me longer”, and he was like, “Oh no!”. He was like “I understand two years into a pandemic”, and I was like, “Yes”, and then I felt I could breathe again because all I could recall, and all I still [00:29:00] sometimes can recall, even with a loving husband and a new home in a new town, all I can recall, even as recent as yesterday was being in a dark room, nothing but the TV light because I couldn’t stand light. I couldn’t stand a lot of sound.
I was so sick that there would be times that I had to prime my hearing and my ears to hear my Godmother, she’s a pastor, to hear her voice, and how I knew I was alive every day was because around 6:37 o’clock I would hear her. She would purposely wait for me to come up to the top of the stairs because I lived in the basement. She would say her prayers on the prayer line so that I could hear them. [00:30:00]
I love that woman with all my heart, my Godmother, and I couldn’t even hug her. I wrote that article because I was like, these are truths that I want to tell other Black women that I know about. See, that’s my motivation for stuff like that.
More than ever, I am a community person, and I just look at and I feel I’m just like there’s no way in the world I could ever operate in a space of selfishness where I wouldn’t write or talk about or engage with other Black women who may be going through this. That’s why, ego aside, because I pay my egotistical moments, but ego aside, I think what resonates with people is I didn’t go to school for science.
I don’t know a lot about research. I don’t do math [00:31:00] very well. What I know is how to write a good sentence where I used to know, I still know, but I can tell you how I feel because I’m self aware and usually what I bet on is the fact that you may have at one time felt that way too. So, I was honest, I did not rest on my laurels, on just my femininity. I just asked him a question. “Could you hug me longer?” He agreed. That’s how we were able to pursue a short relationship. But here’s the thing. The beauty about that is that relationship led me to the one I needed to be in.
Funmi Okunola: That’s wonderful! I mean, you talk about this happening to Black women, but you know what? It happened to thousands, if not millions of people that were living alone, having to shield in place and those dark days where we had to socially distance in the early days of the pandemic even before the vaccine came, it was tough, and you just talked about it so eloquently, then in the article and just now so thank you for [00:32:00] that.
Chimere Sweeney: I want to make this clear about when people ask me, “Why do I talk so much about Black being Black in this experience?” You know why? Because when someone else who is white or male writes about this no one thinks anything about it because they’re so used to seeing the majority express themselves no one thinks about it. When People Magazine writes a story about health, most of the time it’s not about people of color, and we just get so resigned. Yes, we have an inter-connection because we’re human, right? But sadly, a lot of the script of our world has been – let me see how often and how much I can forget your experience to lift my own. So, when people ask me, “Why do you talk about Black experiences?” [00:33:00] It’s not because I’m anti-white, anti-male, it’s none of that. As a matter of fact, Long COVID has taught me how beautifully we are interwoven because of our human experiences. But if I do a deep dive right now, and I don’t have to dive that deep, if I do research on what Black people are saying about Long COVID, still 2024, as we talked about, I won’t see any stories.
I’ll see few. I won’t see any thoughts; I don’t even hear from them. I want to hear from Black men. Well, what is a Black man’s experience with this? That’s why one of the reasons I’m making my film is because I’m like for four years we really haven’t told any stories about Black men with Long COVID. It’s true.
Funmi Okunola: That’s true. I haven’t heard…
Chimere Sweeney: So, when we look at history, right? history will tell you a story and make you believe it. But my goal is to tell [00:34:00] stories to add to what, to add because in America we are dealing with real stuff where everywhere really, but what I can say is state by state, state by state, they’re banning books from our beloved writers, history books that tell the story. I’m making this documentary so that it’s a part of history.
You don’t have to ask a white person their history or whatever, because everything in the world respects them and honors them. I’m making my film. My film isn’t a race film, but I’m just saying that I’m making a film to respect and honor Black Long COVID patients and our ancestral connection so that we can advocate for ourselves in a way like everybody else who has the privilege to do it. That’s why I talk about Black people because we deserve [00:35:00] to have a voice and to be heard, to be seen. I have no qualms about that. I will never apologize for that again. I won’t even edit my language to apologize because I know what my intentions are.
Funmi Okunola: It’s to open up a space of history for us too. Yes, again really eloquently put, thank you. Thank you so much. So, thank you listeners and do join us next week for another Episode of Long COVID – The Answers.
[00:36:00]
Funmi Okunola: Some questions for listeners to consider.
What are your top five takeaways from this Episode?
How will this Episode change your practice or perception of this disease?
What will you do to act on what you’ve learned?
Please discuss your thoughts on our social media outlets such as Twitter or X, our website blog, Instagram, Facebook, LinkedIn.
Please rate this Episode.
SHOW NOTES:
Chimére Sweeney, an award winning , former middle school teacher, writer, film producer, speaker, and long COVID advocate, is interviewed about her Long COVID story. This is the first of two episodes.
REFERENCES
