What It's Like to Be a Black Women Living with Chronic Illness

by Anna Gibson Chronic illness is not always apparent in those who live with it. Millions of people each year deal with chronic illnesses...

by Anna Gibson

Chronic illness is not always apparent in those who live with it. Millions of people each year deal with chronic illnesses that are both visible and invisible. One such illness is a disease that affects hundreds of thousands of individuals in the United States alone: sickle cell disease. According to the Center for Disease Control and Prevention, sickle cell disease affects 90,000 to 100,000 Americans. Far from being a “black disease,” as it’s most commonly thought of being, it occurs across a number of different ethnicities.

According to the US Department of Health and Human Services, sickle cell anemia—the most common form of the sickle cell disease—is “a serious disorder in which the body makes sickle-shaped red blood cells.” Sickle-shaped means that the red blood cells are shaped like a crescent. The disease causes pain in various places in the body, at times causing hospitalization. In order to better understand sickle cell, I had the opportunity to speak to Adrianne Locke, a 42-year-old woman that’s suffered from sickle cell disease since her diagnosis at age 6. She’s had a number of things to say about the disorder, various obstacles she’s encountered, as well as personal triumphs on the road to recovery.
Adrianne recounted a number of challenges she’s faced in dealing with her illness—specifically the way her pain has progressed over the years. She explains that she went through a period of remission from 6th to 11th grade, before the disease came back. “During the 12th grade, I suddenly was just sick, it just hit me. I remember going to a ceremony after school and all of a sudden being overcome with pain. I remember not being able walk from the church, I was so sick. My friends almost had to carry me. The pain became worse as the disease progressed. As you become an adult the disease may cause more serious issues. The pain was bad, but got more severe after the remission.”

For black women, it can be extremely hard to take our limitations into consideration; especially when it comes to illness. In this manner, we are our own worst critics, chastising ourselves for “feeling weak.” Taking advantage of public services like social security, disability, and various other programs are sometimes shunned. However, Adrianne has embraced a number of these services, relinquishing herself of the “strong black woman” myth. Far from making her weak in the process, she’s been able to approach her experience with pragmatism. She knows what she can and cannot do, and acts accordingly. By detailing her own health problems, she hopes that black women everywhere will learn to take their chronic illness—no matter the form—more seriously

To emphasize that point, Adrianne explained that hospital visits weren’t just the result of the pain that comes with sickle cell disease: “Sickle cell can cause additional issues, especially with the joints. I’ve had to deal with numerous hip replacements, and my shoulders are also deteriorating. I’ve also had to get my gallbladder removed and I’ve had a number of blood transfusions. I’ve dealt with pneumonia numerous times in my journey. Not a lot of people are aware that sickle cell can cause those problems.”

Adrianne also spoke extensively about her experiences with strangers who assume she isn’t ill. “Because sickle cell isn’t a ‘visible’ disorder, if I parked in the handicap section and hopped out of car without my cane, I would get strange stares from people. One time I got pulled over by a police officer and had to show my license and the card that shows that I’m handicapped… Another time, a woman shouted at me that I didn’t belong in the handicapped space I’d parked in.”
Studies have shown that police officers are far more suspicious of black people compared to other races, even on a subconscious level. This discrimination and mistrust leads to unfair judgment and scrutiny. Surely if Adrianne was white, she wouldn’t be confronted in such a manner, disabled or not.

Despite all these obstacles, Adrianne’s life serves as an example that no matter what the circumstance you find yourself in, you can still beat the odds and living a fulfilling life. She describes her greatest triumph: “When I think of what I’m most proud of, it’s getting my master’s degree in internet marketing.” Though many people assume that chronic illness is a handicap, people can still lead full lives; it’s just a matter of determination and the will to succeed.

Adrianne’s journey is an example of a woman who’s struggled with a chronic disease, but living life on her own terms. She’s set firm boundaries and moved steadily towards her goals—no matter how challenging. Her life is proof that one can thrive, despite a chronic illness. She demonstrates that even with a chronic illness, it’s how you react to the challenges you face that makes all the difference.

Photo: Shutterstock

Anna Gibson is a Buddhist and a student of Wayne State University. She’s passionate about illuminating the stories of the marginalized. You can find her on Twitter @TheRealSankofa or on Facebook, where she’s hiding under the name Introspective Inquiries.

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