In a quaint restaurant in Rome, Lynett Marie—a Detroit, Michigan native—did a simple yet profound act she hadn’t done in years: She danced.
Her long-awaited trip to Italy with her best friend to attend Easter Mass at the Vatican almost didn’t happen. Just months prior, Lynett Marie was bound to a wheelchair and walker due to a debilitating disease that few Americans know much about: lupus.
Lynett Marie has one of the most common forms of lupus, known as systemic lupus erythematosus (SLE), which impacts the lives of up to 300,000 Americans—and counting. SLE is a complex, chronic disease attacking the body’s immune system. Its unpredictable nature means it manifests in everyone differently, but some of the most common symptoms include fatigue, skin rashes, fevers, and pain or swelling in the joints.
But when Lynett Marie, a self-described “lupus warrior,” finally found the right treatment plan for her SLE, from that point on, she says, “Things just kept getting better, and better, and better.”
But even after diagnosis and treatment, her fight was just beginning. Today, ready and able to once again live life to its fullest, Lynett Marie is rewriting the script on this misunderstood and often misdiagnosed disease—fiercely advocating for the voices of other Black women and fighting systemic disparities within the healthcare system.
Being Her Own Best Advocate
Seven years. That’s how long Lynett Marie was misdiagnosed. Several physicians thought the culprit of Lynett Marie’s chronic pain was rosacea, an inflammatory skin rash. Lupus can be hereditary, and Lynett Marie had a cousin who had passed away with the disease, so she thought it may be possible she had lupus as well. During multiple visits to her providers, she’d frequently ask for more testing, including more frequent blood pressure checks and blood testing to identify her condition. Her own advocacy eventually paid off. But had it not been for her staunch self-advocacy, she still might be looking for answers.
Across the disease spectrum, misdiagnosis is an all-too-common experience for women of color. Notably, SLE disproportionately affects Black women, who experience a more rapid progression of symptoms and worse outcomes compared with other groups, due in part to racial discrimination in the healthcare system.
Lupus, in fact, is a top 10 cause of death in Black and Hispanic women aged 15-44. There are several disparities and social determinants—including socioeconomic status—that impact lupus prognosis. According to the Lupus Foundation of America, Lupus mortality is highest in the U.S. South, and it is associated with poverty, Black/African American race, and Hispanic/Latino ethnicity.
But Lynett Marie turned her long-awaited diagnosis into a call-to-action.
“I want to advocate for more lupus testing for Black women. I was misdiagnosed for years, so I want to raise awareness,” Lynett Marie explained. “There needs to be more support in helping lupus patients – especially for those newly diagnosed – manage not only the complexities of care, but also how to cope mentally.”
Finding the Right Treatment
This bold warrior isn’t afraid to speak about the intense physical and mental toll of SLE. “It’s an illness that really humbles you,” she says, going on to share that her symptoms were exacerbated by several comorbidities: a blood clotting disorder, kidney disease and emphysema.
As her SLE progressed, Lynett Marie’s daily life all but ground to a halt. She was forced to stop yoga, an important daily wellbeing practice. She needed a wheelchair and walker to go everywhere, unable to even drive herself to the grocery store.
Even after her lupus diagnosis finally came in 2020, Lynett Marie’s fight was just beginning. She did her best to keep up at work as a project manager at a Fortune 500 company in Detroit, then as a publicist in California. But the steroid treatment she was receiving — a common standard of care of lupus treatment plans today — caused intense pain and mood swings, she recounts. Steroidal treatments are also known to have long term damaging effects on their organs.
“Pretty much everything was failing me. I kept getting septic shock. Before finding the right treatment plan to address my lupus, simple things like walking were difficult. Staying hydrated was also difficult, as was combating the side effects of various medications, particularly steroids,” she says. “The biggest thing for me was not having to take the steroids anymore. It was the game changer.”
It was a rough road before she finally found the non-steroidal SLE treatment plan that was right for her. She received her first treatment a mere three months prior to her seminal trip to Italy.
And that walker today?
“Matter of fact, I was just in my garage, and started kind of getting emotional. My walker and wheelchair were in there. They were my best friends at one point. Now, I can take myself anywhere.”
Empowering Advocacy for Others
What was once a painful, exhausting trek to the hospital for treatment has turned into a more lighthearted ritual for Lynett Marie now that she has found the right treatment plan.
“The morning of my treatment, I’ll shower, have a glass of water and toast. Get dressed. I even have a go-to treatment outfit! My black Adidas jogging suit, I have like eight of them,” she says. “At the hospital, the nurses, who are my angels, are asking ‘Where have you been traveling? Show us pictures!’ Afterwards, I might even take myself to get my nails done or go on a Target run.”
While her condition continues to present obstacles, Lynett Marie hasn’t let it stop her from living her life. She has tapped into her strength and taken ownership of her life. She is back to doing yoga. She’s active in her church. Her current focus is living out loud and not letting the small things get to her, striving to be the best version of herself and providing support to those suffering from the disease.
Because of her own experience with lupus, Lynett Marie is aware of the challenges other Black women with lupus face. A part of her advocacy includes the constant encouragement for Black women to conduct independent research and be armed with facts when seeking professional medical assistance.
Lynett Marie shared it is imperative for lupus patients to advocate for themselves when determining a care plan with their doctor. In large part, the lupus warrior credits the continued support of her entire community for changing her life for the better.
“Now, my mental health has improved significantly. And it just improved my quality of life overall. I mean, I have trekked around the world, you know, since the last eight or nine months.”
Recently, she organized 200 family members from across the country for a reunion, an experience she described as enriching and life-giving.
“I’m making the most of each day. I was on the verge of death, and by all accounts, should have passed away. But I overcame it, and I’m using my life to be a positive influence for everyone. If I can inspire people to be happy and proud of who they are, then I will know I have left a good legacy.”
This article is sponsored by AstraZeneca. To learn more about living with lupus click here.