ST. LOUIS — Tammy Clemons had spent the morning in the emergency room, surrounded by nurses checking her vitals, offering blankets, and trying to alleviate the beeping alarms that seemed to follow her everywhere. She longed to be with her sister, who had recently gone through a stillbirth in another hospital nearby, but instead, Clemons found herself in the midst of her own health crisis.
The pain had started on Friday while she was at work in a beauty supply store. Despite the sharp discomfort in her belly, she tried to hide it, not wanting to draw attention to her sickle cell crisis. The disease was unpredictable and often stigmatized, leading Clemons to navigate the complexities of managing her symptoms while also trying to maintain a sense of normalcy.
At 41, Clemons was no stranger to hospital visits. She had developed a personalized pain treatment plan at Barnes-Jewish Hospital, where she received regular blood transfusions and specialized care for her sickle cell disease. Despite the familiarity of the hospital routine, Clemons often kept her visits a secret from her family, not wanting to cause unnecessary worry.
The pain in her body was relentless, a constant reminder of the warped cells that disrupted her blood flow, causing excruciating discomfort. As she scrolled through TikToks in her hospital bed, she awaited the nurse’s next steps in managing her pain.
The doctor arrived, discussing the possibility of admitting Clemons to the hospital if her pain persisted. Reluctant to stay, Clemons expressed her desire to go home and continue her treatment there. The doctor respected her decision, emphasizing the importance of her autonomy in choosing her treatment path.
As Clemons transitioned to the sickle cell clinic for further treatment, she reflected on her journey with the disease. Grappling with the challenges of managing her symptoms and making difficult medical decisions, Clemons found solace in the care provided by her hematologist, Dr. Sana Saif Ur Rehman.
Dr. Saif’s dedication to treating sickle cell patients in underserved communities resonated with Clemons, who valued the personalized care and support she received. Their discussions about treatment options, including the possibility of pheresis to address her symptoms, shed light on the complexities of living with sickle cell disease.
Navigating the complexities of her health and personal life, Clemons found strength in her work at the beauty supply store. Interacting with customers, offering advice on hair care products, and engaging with her colleagues provided a sense of normalcy and purpose amidst her health challenges.
As she reflected on her decisions regarding reproductive health, including a past tubal ligation and hysterectomy, Clemons found peace in her role as a caregiver to her late brother’s children. Despite the challenges she faced, she embraced her role as a supportive figure in their lives.
Returning to work, Clemons found comfort in the familiar routine of the store, engaging with customers and colleagues in conversations about hair care and beauty products. As she navigated the challenges of her health journey, Clemons remained resilient and determined to maintain a sense of normalcy in her daily life.
As the day came to a close, Clemons reflected on the challenges she faced, the support she received from her family and medical team, and the resilience that carried her through each obstacle. Despite the uncertainties and complexities of her health journey, Clemons found strength in her ability to navigate the challenges with grace and determination.
This story is part of ongoing coverage of reproductive health care supported by a grant from the Commonwealth Fund. Our financial supporters are not involved in any decisions about our journalism.
