By Connie Reese Founder & Executive Director SAYA Inc.
Dedicated to every individual and every family whose life has been touched by sickle cell disease. Your pain matters. Your voice matters. Your life matters.
For more than three decades, I have lived with sickle cell disease—not in my own body, but through my adult daughter and my adult son. As their mother, I have spent countless days, sleepless nights, holidays, birthdays, and family gatherings in emergency rooms, hospital rooms, and intensive care units, watching them endure pain that most people cannot imagine.
Sickle cell disease is more than a diagnosis. It is a lifelong battle. It does not recognize birthdays, holidays, careers, or family plans. A normal day can become a medical emergency within hours. Yet one of the hardest parts of this journey has not always been the disease itself. It has been watching my children fight to have their pain believed and treated with the urgency, dignity, and compassion they deserve.
Over the years I have sat beside hospital beds holding my children’s hands while they cried in pain. I have watched the clock, hoping relief would come. As a mother, there is no greater feeling of helplessness than watching your child suffer while knowing you cannot take the pain away.
One experience has never left our family. During one hospitalization, while my daughter was receiving IV pain medication during a sickle cell crisis, she asked a nurse why he had drawn fluid back into the syringe before administering the medication. According to my daughter, his response was, “Oh, you must want to get high.” Those words were devastating. My daughter was not seeking a high. She was seeking relief from excruciating pain caused by sickle cell disease. We formally reported that interaction because no patient should be made to feel stigmatized while seeking emergency medical care.
Another concern our family has experienced involves education surrounding sickle cell pain management. During a severe pain crisis that my daughter described as level-10 pain, there were discussions about using medications such as gabapentin and muscle relaxers while emphasizing that pain treatment is “not just about narcotics.” While different medications can have appropriate roles depending on a patient’s condition, a severe sickle cell vaso-occlusive crisis requires timely, individualized, evidence-based treatment. Families should never feel that misconceptions or stigma are delaying appropriate care.
I also want to acknowledge the many physicians, nurses, technicians, and other healthcare professionals who have cared for my children with kindness, professionalism, and compassion over the years. This article is not intended to condemn an entire profession or any one healthcare institution. It is a call for continued education, empathy, accountability, and partnership with patients and families.
This issue extends beyond one family. Across the country, many individuals living with sickle cell disease have described feeling unheard, facing delays in pain treatment, or being viewed with suspicion during moments of severe pain. Their stories deserve to be heard—not to assign blame, but to inspire meaningful improvement.
We are not asking for special treatment. We are asking for appropriate treatment. We urge healthcare systems to continue strengthening education on evidence-based sickle cell care, reduce stigma surrounding pain treatment, listen to patients who know their disease, and ensure that dignity and compassion remain central to every encounter.
I share my family’s story because awareness leads to conversation, conversation leads to education, and education leads to change. If our experience encourages one healthcare professional to listen more closely, one hospital to improve its practices, or one family to feel less alone, then telling our story will have been worthwhile.
Living with sickle cell disease is already one of life’s greatest challenges. Fighting to be believed should never have to be one of them.
Connie Reese
Founder & Executive Director SAYA Inc.