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Phyllis's Story

The beginning of 2019 began like most years for Terry MS resident Phyllis Lewis. She and her husband Derrick were enjoying their empty nest. Her two adult children had been out of the home living their own productive lives for a while now. She and Derrick worked and spent their free time traveling here and there, exploring, fishing, and dropping a coin or two at a casino in Shreveport, LA, which they like to frequent.

Phyllis, a medical biller, never had any health issues and rarely got sick. In 2019, she began feeling ill. Thinking it was the common cold or flu, Phyllis went to the clinic, and they told her nothing was wrong.

Soon after taking the medications, Phyllis began to get weak, so much so that she couldn’t walk or move around well. After a couple of days, she couldn’t move at all. She was stuck in bed, not even mobile enough to use her phone.

Her sister knew she wasn’t feeling well and grew concerned when she didn’t hear from her that day. She stopped by to check on her and found Phyllis lying still in the bed with a 101º fever. Her husband had to come home, carry her to the car, and take her to a hospital.

Phyllis stayed in the hospital for a week. Doctors told her she had prednisone-induced diabetes. Prednisone was one of the medications prescribed to Phyllis when she initially wasn’t feeling well, and they continued to give it to her when she came to the hospital to “taper her off.” However, the drug had raised her insulin levels and made it hard for her to function. It led to more problems down the road for Phyllis.

Phyllis didn’t feel listened to her. Her doctor told her she would transfer her to another hospital for a specialist. Instead, the doctor discharged her after a week without any improvement.

After being discharged and unable to function, she decided to go to the hospital just two days later. However, doctors still had difficulty telling her what was wrong. She saw more than 20 doctors while at that hospital. On her seventh day in, one of the doctors diagnosed her with Adult Onset Still Disease, a very rare condition. Even with this diagnosis, Phyllis felt her concerns were still not being listened to because her symptoms (high blood pressure, kidney issues, fever) did not align with the doctor’s diagnosis.

Her concerns heightened because she felt doctors had given up looking for a solution. The diagnosis felt no better than not knowing because it led to no improvement in her condition. She had two more hospital visits before her issues seemed to subside. After her third hospital visit, she began to feel better. Flare-ups are not as bad as it was initially.

Phyllis is still looking for answers. What happened to her? What does she need to improve her condition? She desperately seeks a solution because she has hip issues. Namely, for the necrosis in her hip formed by medication she was prescribed and administered in the hospital.

Phyllis had hip replacement surgery but is still in pain. Moving around with constant pain from her shoulders to her feet is still challenging. She feels like she’s deteriorating.

Her desire to get rid of the pain has led her to see doctors in other cities like Chicago and St. Louis. Although Phyllis feels she has a better understanding, she still struggles to get the care needed when she returns home to Mississippi. A significant reason is that her Mississippi doctors are not hearing her, and when the out-of-state doctors consult them about her history, they insist that nothing is wrong and that she must be “crazy.”

Perpetuating the idea that a woman with a beautiful life and family would suddenly pretend to be sick and in pain is the only crazy thing about this message. Healthcare professionals have continuously dismissed Phyllis. Yet it happens every day. Black women are overlooked, called crazy, and sent home without answers.