Shamekka Marty is a patient advocate and a chronic illness survivor. In 2012, she was diagnosed with lupus, scleroderma, mixed connective tissue disease, Raynaud’s syndrome and Sjogren’s syndrome. Since her diagnosis, she uses her pain and suffering to inspire other chronic illness warriors.
Black women like Marty are three times more likely to develop lupus than white women. A slew of reasons contribute to that statistic including the fact that they have a harder time accessing care due to systemic barriers such as transportation and lack of health insurance.
What Is an Autoimmune Disease
There are more than 80 known autoimmune diseases, including rheumatoid arthritis, lupus, multiple sclerosis, type 1 diabetes, inflammatory bowel disease, psoriasis and Hashimoto’s thyroiditis. An autoimmune disease is a specific type of chronic illness.
Marty explains that while all autoimmune diseases are chronic illnesses, not all chronic illnesses are autoimmune diseases. Autoimmune diseases specifically involve an abnormal immune response targeting healthy cells and tissues in the body, causing inflammation and tissue damage.
What Life With an Autoimmune Disease Looks Like
Marty says a day in the life of a woman living with an autoimmune disease can vary greatly depending on the specific condition, its severity and individual factors such as treatment regimen, lifestyle adjustments and support systems.
Morning Routine
Women living with an autoimmune disease may start the day by waking up feeling fatigued or experiencing stiffness and joint pain. Since getting out of bed can be challenging, she might allow herself extra time to stretch, do gentle exercises or engage in relaxation techniques to alleviate discomfort.
“I wake up with brain fog and deal with managing what hurts throughout my body,” Marty said. “After getting ready for the day, I log on to work, and sometimes, I have to run to the lab to do my blood work, which I do on a weekly basis.”
Afternoon Routine
Throughout her day, a woman living with autoimmune disease may encounter various obstacles and uncertainties due to her autoimmune disease. She may need to make accommodations, such as taking frequent breaks, while managing various symptoms, such as pain, fatigue, digestive issues or cognitive impairment.
Marty explains that she might have appointments with various healthcare providers that involve routine check-ups, monitoring of symptoms, adjustments to treatment plans or discussions about new symptoms or concerns. She might also practice self-care techniques such as meditation, heat therapy or using assistive devices to alleviate discomfort.
“Throughout the day, I take my scheduled meds and have possible online doctor visits or tests,” Marty said.
Evening Routine
Toward the end of the day, a chronic illness survivor might prioritize relaxation and self-care activities to help unwind and prepare for restful sleep. This could include gentle stretching, taking a warm bath, practicing relaxation techniques or engaging in a calming hobby before bedtime.
Medications and Diet
Depending on her treatment plan, Marty explains that a woman living with an autoimmune disease might take medications in the morning and also administer self-care treatments like injections or infusions. She may follow a specific diet tailored to her autoimmune condition, such as an anti-inflammatory diet or one that avoids trigger foods known to exacerbate symptoms. This could involve preparing meals at home using fresh, whole ingredients and avoiding processed foods, gluten or dairy.
Why Black Women Experience Autoimmune Diseases at a Higher Rate
The interaction between genetics and environmental factors likely contributes to the higher prevalence of autoimmune diseases among Black women, Marty explains. Both her mom and grandmother lived with autoimmune disease. Her mom had Lupus and her grandmother had severe rheumatoid arthritis.
“Black women often face multiple sources of stress, which may increase their vulnerability to autoimmune conditions,” she said. “My mother for instance went through a very bad relationship with my dad that left her heart broken and soon after her Lupus manifested.”
Tips for Managing Autoimmune Disease
Marty suggests drinking lots of water, always taking your medication on time and getting a lot of sleep. She also explains that if you can write down your symptoms or use an app to track them, then you can better manage your symptoms as you discover patterns. Marty also encourages sufferers to do things that make them happy such as going outside for a walk, painting, journaling or reading.
“Above all else – listen to your body,” Marty saiad. “If you are able to stop and rest, then please do!”