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As Black women, we’re the backbones of the family—we take on the responsibility of family, friends, and our communities. We also are disproportionally impacted by lupus—and our relationships are the center of our battle with this disease.
According to an NIH study, African-Americans in the U.S. have three to four times greater prevalence of lupus, risk of developing lupus at an earlier age and lupus-related disease activity, damage and mortality compared with Caucasians, with the highest rates experienced by Black women. A chronic autoimmune disease, lupus can affect any part of the body (skin, joints and/or organs inside the body), according to Lupus.org. With lupus, your immune system cannot tell the difference between “foreign invaders,” like the flu, and your body’s healthy tissues—so it fights healthy tissue as well as germs and viruses. This causes inflammation (redness and swelling) and pain. People with lupus have flares (the disease gets worse and you feel bad) and remissions (the disease gets better and you feel good). The most common symptoms are extreme fatigue, headaches, low fevers, sensitivity to light, chest pain when breathing deeply, and pain/swelling in the joints, hands, feet, or around the eyes.
Now, knowing that Black women cultivate many important connections in their personal and professional lives, a first-of-its-kind-study was recently done by Dr. Trevor D. Faith to explore how lupus affects these relationships. After synthesizing the results of multiple studies, Dr. Faith suggests that romantic-familial relationships, physician-patient relationships, and the patients’ relationships with themselves tend to be the most important to women with lupus.
Romantic & Familial
Black women living with SLE (systemic lupus erythematosus), expressed difficulty with physical contact leading to pain. For example, a firm handshake could lead to throbbing pain in a lupus patient’s hands. Hugging can also be problematic as one woman in the study said. She had to speak with her church’s deacon to let them know that hugging posed a problem because her immune system was compromised due to lupus, and she, more easily than others, caught colds from simply hugging individuals who had colds at church.
Participants in the study also expressed wanting to interact with family, but at the same time, finding it difficult to negotiate the amount of engagement and interaction when experiencing a flare. And experiencing pain with physical touch is especially hard to navigate in romantic relationships. One woman said it can be challenging to feel well enough to get dressed to go out on dates. While other participants said how the pain associated with their illness interfered with the desire for the slightest touch or intimacy and made it difficult to explain that their momentary ‘rejection’ was not personal.
Participants in this study talked frankly about a lack of empathy on the part of the provider, and patients are feeling that this is compounded by a lack of trust and poor communication on the part of the patient. Unfortunately, this perpetuates unfavorable attitudes towards physicians and medications that we see in Black communities. The hope of these women in the study is to see a more empathetic presence and understanding of the challenges associated with having lupus from employees working in provider offices, especially direct care staff.
Caring For Yourself
With a disease, like lupus, self-care is the utmost importance. Women discussed how they have had to make adjustments to their daily work functions since having been diagnosed with SLE and accepting their diagnosis. They described that on some days they are normally physically capable, whereas on other days, they can do very little or nothing at all. They take it day by day, refocus their energy on themselves, and have increased their spiritual beliefs to help them remain compliant to their medical regimens and cope.