Living with sickle cell disease requires more of a patient than just managing symptoms. One major necessity is the ability to effectively communicate one’s needs. Self-advocacy is a lifelong skill that enables people with the disease to effectively navigate healthcare systems, educational settings, workplaces, and personal relationships. When nurtured early and strengthened over time, self-advocacy can empower patients to take an active role in their care and their lives.
People with sickle cell disease often must interact with healthcare providers, teachers, and employers more frequently than their healthy peers. Additionally, a sickle cell diagnosis can, unfortunately, lead to negative stigma and erroneous preconceived notions about patients, through no fault of their own. Therefore, to combat this, I believe it is essential that parents and caregivers invest time in developing self-advocacy skills in children with the disease.
Self-advocacy can help people explain their condition, ask informed questions, and make decisions that align with their goals. It also builds confidence and reduces feelings of helplessness that can come from having a chronic illness. It can result in better pain management, appropriate accommodations, and respectful treatment. Admittedly, it is unfair that the quality of treatment might depend on a patient’s own ability to advocate for themselves, but that is the reality for sickle patients around the world. That’s why I think it’s important for parents of children with sickle cell disease to prepare them for this reality.