Despite prior experience working in public health, I’ve faced challenges getting care for Long COVID and chronic seizures.
Editor’s note: This as-told-to essay is based on phone conversations Kelly Sealey had with editor Miles W. Griffis that have been condensed for clarity.
Sometimes when I take my dog across the street to use the restroom, my cognitive symptoms cloud my mind and make it hard to find my way home; I literally feel lost in my own neighborhood. Luckily, Sally, our standard poodle and my service dog, is always there.
“Take mommy home,” I tell her, and she gently and safely leads me through our neighborhood, back to the front doorstep of our home. I usually have to sit for about five to ten minutes on a bench next to our doorstep to regain clarity to know where I am.
We had Sally trained as a service dog after I got Long COVID in 2022, and she’s become a lifeline. She helps manage my cognitive dysfunction and postural orthostatic tachycardia syndrome (POTS). When my heart rate or blood pressure spikes, she paws at me or licks my hand, continuously signaling for me to sit or lie down. Once I’m horizontal, she applies deep pressure therapy, lying on top of me to calm me and help my body to regulate itself.
Like clockwork, she’ll suddenly get up and walk away — and when I check my heart rate and blood pressure, I’ll see it has stabilized. She’s done her job.
Sally has also learned how to alert my family during my seizures, which I developed in 2025. I had 80 seizures that year — more than one a week. They came without warning and quickly took over my life. When I start to shake, she barks to alert my husband and children.
Sometimes, it feels like she knows a seizure is coming before I do. She gently climbs on the couch with her front paws and licks me right when the convulsions begin; it’s like she is trying to make sure I stay alert or come out of the seizure quickly. She is such a blessing to me and my family.
The seizures are unpredictable, and they control so much of what I can and cannot do. In fact, I’ve learned how interconnected all my disorders are and how a flare-up with one can trigger a flare-up for another, or a seizure, or both. I try to remain hopeful, but it is a challenge on some days more than others.
Despite some research showing that COVID-19 can cause new seizures, many doctors still don’t understand what’s happening to me. There’s very little research on chronic seizures in people with Long COVID.
And too often, instead of reassurance or answers or even next steps, I’m met with dismissal and the infamous, “You’re just stressed.”
I’ve seen countless specialists for Long COVID and my seizures. While a few have helped guide my care, most have gaslit me. I’ve never in my 47 years of life or 20-plus years of working in healthcare experienced such interactions with medical professionals. I can’t help but wonder if this is tied to my race in some way, given how Black women are treated by some providers.
I’m sad because even after four years of seeking care, I am in the same place. One doctor I saw last summer labeled me as a “difficult” patient who was “hesitant” to accept a diagnosis because I asked questions about how she arrived at her conclusion. This neurologist was very cold and wanted to walk in and tell me the diagnosis and leave as soon as possible. She was even dismissive of my 74-year-old mother, who was there as one of my primary caregivers.
When I got home and read the clinical notes, which I always do in case I have questions, my concerns weren’t even acknowledged. Instead, the doctor wrote that I was resistant to treatment, after she had prescribed cognitive behavioral therapy.
When I followed up, she told me, “I wrote what I saw and observed, and it should not be questioned.” I cried after reading that, because of her dismissiveness. I know that words matter, especially in the medical community, and she described me incorrectly.
In this house, we celebrate a diagnosis — but only if it’s accurate, and the provider makes us feel comfortable or reassured that some progress will be made.
Too often, providers suggest anxiety or depression when they don’t have answers. But Long COVID is a biological illness. Being dismissed like that forces me to manage not only my symptoms but my emotions in every appointment. I feel like I have to be “pleasant” just to be taken seriously.
When one neurologist told me I was “just depressed and anxious,” I finally said, “We’re going to stop the gaslighting right now.”
When one neurologist told me I was “just depressed and anxious,” I finally said, “We’re going to stop the gaslighting right now.”
That’s the reality for people with Long COVID: We have to advocate for ourselves every single time. And these dismissive experiences of living with chronic illnesses are especially hard for me because I know what good public health work and patient care look like.
Before becoming disabled, I worked for years in medical education and public health. Earlier in the pandemic, I worked with marginalized communities through the Shelby County Health Department in Tennessee, helping break down barriers to testing and educating people about COVID-19. I know how health systems are supposed to work.
Even when I do find good providers, navigating the system is exhausting. There’s no communication between specialists, no coordination of care. Managing appointments, records, and follow-ups has become a full-time job — one many of us are too sick to handle.
The disease has taken so much from me. I miss so much of life with my daughters and husband. I was an athlete growing up, doing cheer and pom, and a lifelong sports fanatic. I miss a lot of family time now: My two daughters are 11 and 17, and they both play volleyball. I used to travel around the South as a volleyball mom with them, but now I have to watch from home or in a hotel on my laptop. This is mommy–daughter stuff I’m missing out on because I’m stuck on the couch.
It was after a volleyball tournament during the first Omicron wave that I first got sick with COVID-19, in early 2022. I know my abilities and what I used to be capable of before Long COVID, so when doctors tell me I’m experiencing anxiety or that I just need to rest, I refute that entirely.
Over time, my frustration turned into something else: advocacy.
In 2023, I spoke at a National Academies of Science, Engineering, and Medicine (NASEM) symposium, contributing to the effort to define Long COVID for the medical community and government agencies. I talked about how dismissing people’s experience with Long COVID leads to delayed diagnosis and limits access to care.
I also served as a patient representative on the REVERSE-LC clinical trial, helping researchers think about accessibility — especially for Black people, given the long history of mistrust shaped by events like the untreated syphilis trial in Tuskegee, Alabama. Recently, I presented at the Long COVID Science and Society Conference at Columbia University alongside key global leaders in the fight against Long COVID.
Advocacy came naturally to me. It’s something I’ve always done for communities who felt like they didn’t have a voice or were underserved. This was from the heart because I love humanity and desired to help shrink the gaps in health disparities in our city. But now, my advocacy is more personal. I’ve become the unseen, unheard, and underserved — I’m determined to be the squeakiest wheel.
But there have been moments of hope.
I found a neurologist, a Black woman, who truly saw me. She told me that what I was experiencing wasn’t uncommon. For the first time, I felt believed. More recently, I’ve received phenomenal care at the Mayo Clinic and the Cleveland Clinic. There, no one dismissed me. No one reduced my symptoms to anxiety. Even reading my clinical notes felt different.
It shouldn’t be rare to be listened to. But after everything, it felt like a breakthrough. I am still searching for answers. I am still living with seizures that no one can fully explain. But I am still here.
Still a wife. Still a mother. Still an advocate. Still fighting — for care and dignity. Because no one living with Long COVID, especially Black women, should have to fight this hard just to be believed.
It shouldn’t be rare to be listened to. But after everything, it felt like a breakthrough.
Kelly Sealey is a seasoned healthcare education and community engagement leader with 22 years of experience spanning academic medicine, public health, and surgical training. A Long COVID patient advocate, Kelly has presented at the National Academies of Sciences, Engineering, and Medicine (NASEM) Conference and contributed to NIH clinical studies sponsored by the Critical Illness, Brain Dysfunction and Survivorship (CIBS) Center at Vanderbilt University Medical Center.
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