For years, Latonya knew something wasn’t right. Her body was fighting against her, but every time she sought answers, the medical system sent her in circles. Misdiagnosed, mistreated, and left without real answers, she had to become her own advocate—something many in the Black community face when navigating healthcare.
Her journey with lupus, an autoimmune condition, wasn’t a straightforward one. It took over a decade for her to receive the correct diagnosis, all while being treated for conditions she never had. “In 2014, I was diagnosed with endometriosis and had surgery to reduce it,” she shared. “Then in 2018, I started having complications. They told me I had some type of stomach disorder, gave me medicine, and I kept having reactions.”
The medication wasn’t helping because the diagnosis wasn’t right. It took seeking care elsewhere for Latonya to finally get closer to the truth. “I left that hospital and went to another one, and they found out it wasn’t a stomach issue—it was my endometriosis acting up,” she explained.
Years passed, and the puzzle pieces still weren’t adding up. Eventually, she learned that she had lupus and had likely been living with it for more than 10 years. “All the conditions and sickness I was having were a reaction to lupus,” she said. “No one ever diagnosed me with it. I was never told, never treated. Instead, I was given treatments for something totally different.”
The Healthcare System Failed Her—And She’s Not Alone
For Latonya, the biggest frustration wasn’t just her misdiagnosis—it was the fact that it took so long for doctors to take a deeper look. “The healthcare system needs to be restructured,” she said. “Some doctors don’t care. Some don’t research enough. They just look at the surface and don’t take the time to do the history, to make sure the patient actually gets the right diagnosis with the right treatment.”
She doesn’t believe the issue is limited to just the Black community, but she does see how lack of access, historical mistrust, and miscommunication make things worse. “We are not aware of our history, our culture, our family history,” she pointed out. “So we don’t always know what we could be facing or what to ask. If you don’t know your family’s medical background, you don’t know what to look for, and doctors aren’t always going to ask those deeper questions either.”
That’s why she became her own biggest advocate. “I’m in the healthcare field, so I knew something was wrong,” she said. “When I went to the doctors and they weren’t paying attention, I switched. If they weren’t giving me the care I needed, I moved on. We, as people, tend to just take what doctors give us without asking questions.”
Switching Doctors Can Save Your Life
For Latonya, changing doctors wasn’t just a preference—it was a necessity. “I believe it’s very important to switch doctors if you’re not getting the right care,” she emphasized. “You need a doctor who works for you. A doctor who’s going to give you the right plan, the right medicine, the right information. Otherwise, you’re just going in circles.”
By the time she was properly diagnosed, years had passed. That meant starting over—finding new doctors, creating new treatment plans, and letting go of previous medical professionals who had overlooked her symptoms. “All the doctors I had before? I had to get rid of them,” she said. “Because no one saw it. No one diagnosed it. And because they didn’t, I had to start from scratch.”
The consequences of misdiagnosis are bigger than just delayed treatment. They can lead to unnecessary prescriptions, excessive pain management, and, in some cases, addiction. “When you don’t get the right treatment, they just give you pain pills,” she explained. “And pain pills don’t solve the issue. People get addicted, and nothing actually gets fixed.”
Would She Consider Clinical Research Studies?
Despite her experience with the medical system, Latonya isn’t completely closed off to new treatment opportunities. “I’ve never been offered a clinical trial,” she said. “But if I was, I would look into it. Honestly, most doctors don’t know anything, so maybe somebody in research has answers.”
The decision to participate in a study isn’t one she would take lightly. She knows how important it is to do the research, ask the right questions, and make an informed choice. “I believe in doing my due diligence,” she said. “I want to be educated on what I’m looking into. I want to know what questions to ask, what drugs they’re testing, what the side effects are. It’s my responsibility to understand what I’m signing up for.”
Being Proactive About Health
Living with lupus means Latonya has to pay close attention to her body—especially her heart health. “I get checked up often,” she said. “Whenever I have a flare-up, I go in, and they always run the same tests. I probably get checked three or four times a year.”
She also uses technology to help her stay on top of things. “I have a smartwatch,” she said. “It helps to an extent—it can track my heart rate and show when my levels are going up. But it doesn’t stop anything from triggering.”
Beyond tracking her numbers, she’s intentional about staying active. “I walk my dog, I swim, I meditate, I detox,” she said. “Heart health is important because Black people are the number one group dying from heart attacks. We hold stress more than other people. Stress is an everyday thing, and if you don’t find balance, it will take you out.”
Her Advice to the Community
Latonya’s journey is one of resilience and self-advocacy. She refuses to let the system dictate her health without holding it accountable. If there’s one thing she wants others to take away from her experience, it’s this:
“If you’re curious, find out. If you have questions, ask. If you feel like your doctor isn’t giving you the right information, find another one. No question is too dumb. If you don’t understand something, don’t walk away until you do.
Ask your friends. Ask your family. If you know a nurse or a doctor, ask them. If something doesn’t feel right, trust that feeling. Don’t just take what you’re given.
Because at the end of the day, a lot of doctors don’t know anything. And if you don’t speak up for yourself, no one else will.”
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