Keelie has turned her experience with Sickle Cell disease into a powerful narrative of self-advocacy and empowerment. By openly sharing her diagnosis, she educates those around her while navigating the complexities of the healthcare system. Keelie's commitment to staying informed and advocating for herself has become a cornerstone of her journey.
Continue reading to discover how Keelie empowers herself and others in the face of chronic illness.
Embracing My Health Condition
Living with Sickle Cell disease comes with its challenges, but I have learned to embrace my condition and transform it into a teaching opportunity.
I am no longer shy about sharing my health condition with others. Instead, I view it as a chance to educate those around me. Staying up to date with new advances and treatment options for Sickle Cell disease has become a priority for me. For several years, I have maintained a detailed medical tracker that enables me to know my conditions, physicians, baseline, medications, hospital admissions, and procedures by heart. This meticulous organization empowers me, as I have the necessary information at my fingertips whenever I need to share it.
Standing Up for My Rights
During my last hospital admission, I faced an unpleasant encounter with a first-year resident physician who was clearly unfamiliar with treating patients with Sickle Cell disease. He made changes to my pain medication and other prescriptions that would have caused me severe discomfort. Advocating for myself during his overnight shift was not easy. I involved the head nurse, the patient representative, and eventually the head physician of the unit. My situation became a teaching moment for future doctors on that unit, as word spread about my advocacy. The staff treated me with respect, knowing that I was knowledgeable about my diagnosis and treatment plan. Any changes made had to be communicated and approved by me first.
Navigating the Healthcare System
I understand that most hospitals are understaffed and that nurses are the backbone of the units. However, I make it a point to remind my nurses to read my chart. I ask physicians to explain everything in plain English, ensuring I fully comprehend my care. I treat all medical professionals with respect, regardless of my pain level or discomfort. Still, if I feel neglected or disregarded, I am not afraid to report the issue or escalate my concerns. It’s essential to remember that while they are doing their jobs, my life is on the line during my hospital stays.
Empower Yourself with Knowledge
Empowering yourself is crucial when managing a chronic illness. I encourage everyone to keep their own medical chart, update it regularly, and share it with loved ones in case you aren’t well enough to speak for yourself or need backup. Knowledge is power; the more you know about your condition, the more confident you will feel when engaging with physicians. Explore your options and seek new treatments or doctors if you’re not satisfied with your current care. Remember, you are your biggest advocate!
Follow Keelie on Instagram to learn more about her journey.
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