Living with Sickle Cell Disease: Lessons, Challenges, and Self-Discove - Care+Wear
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Living with Sickle Cell Disease: Lessons, Challenges, and Self-Discovery

  • 4 min read

Meet Keelie

Keelie is a relentless chronic illness warrior, advocate, and speaker. Since the age of 13, Keelie has been facing the challenges of sickle cell disease head-on. By sharing her journey, her mission is to shed light on this condition, raising awareness and offering support to those who may be facing a similar battle.

Continue reading to learn more about Keelie's journey with sickle cell disease.

What are unexpected challenges that came with your diagnosis and how did you overcome those obstacles?

Despite grappling with a chronic illness like sickle cell anemia, I managed to maintain a semblance of normalcy in my life. However, one of the most significant challenges I faced was the development and progression of Avascular Necrosis Arthritis, a disease that results from a loss of blood supply to the bone.

It all began when I was just 13 years old, and I noticed a slight limp that gradually worsened over time. It wasn't until it became noticeable to others that I decided to seek medical advice. After a series of appointments, I was given the unexpected diagnosis of arthritis. I couldn't quite believe it; I had always associated arthritis with older age. At that time, I was unaware of the numerous potential complications associated with sickle cell disease. Following the diagnosis, I was advised to steer clear of contact sports, avoid long-distance running, and limit physical exertion. Consequently, I found myself exempt from participating in physical education classes every semester.

Despite these challenges, I persevered throughout my adolescence and completed my high school education. However, it took a total of seven years before I underwent my first major surgery – a complete left hip replacement. I strategically scheduled the operation to coincide with my first semester at university, during the summer break, allowing me a three-month recovery period before returning to school for the fall semester. My motivation stemmed from an unwavering determination to not let my illness impede my broader aspirations and goals.

Can you recall a specific moment or experience that has had a profound impact on your perspective as a Sickle Cell Warrior?

I used to be extremely private when it came to revealing my health condition to anyone outside my immediate circle. I went to great lengths to ensure that only my family and close friends were aware of it. There were times when I was unwell or hospitalized, and I intentionally kept it to myself, depending on my mood or the severity of the situation.

As I transitioned into becoming an independent working adult with responsibilities and commitments, I encountered a series of challenging experiences with employers. While some of these situations might have unfolded similarly regardless of my level of transparency, I began to realize that being more open about my limitations could potentially have fostered better communication and understanding.

Life led me to meet new people, expand my network, and navigating these relationships while keeping my health condition hidden became increasingly difficult. With the encouragement of my immediate circle, I decided to start educating those around me about my condition, with the aim of strengthening my support system. This decision had a ripple effect, and I eventually reached a point where I no longer felt the need to conceal my health issues. I adopted a "take me as I am" mentality, believing that the right friends, associates, schools, and jobs would accept me for who I was.

Today, one of my life's purposes is to encourage others to embrace their authentic selves. Sickle Cell Disease is no longer a taboo topic for me. I firmly believe in the strength of numbers and the importance of visibility for those who may look to me for inspiration.

If you were to write a letter to your younger self, who was just starting to navigate life with sickle cell disease, what advice and wisdom would you impart?

If I could share some wisdom with my younger self, I would start by imparting a lesson on self-confidence. I'd tell myself not to be self-conscious about my slender physique. The fact that I struggled to maintain weight due to frequent Sickle Cell pain crises should not be a source of worry. I'd assure my younger self that I was a late bloomer who would eventually become comfortable in my own skin and find my own sense of confidence.

However, there's one thing I would definitely change – my non-active lifestyle. Despite being advised to avoid contact sports, I would encourage myself to focus on developing better strength, stamina, flexibility, and mobility through regular exercise. I'd emphasize that starting a fitness journey as an adult is more challenging than maintaining it from adolescence.

Additionally, I would urge my younger self to be more inquisitive about Sickle Cell Disease. Learning about my triggers, limits, and potential side effects would have allowed me to have better self-awareness. With that knowledge, I could empower those around me, as my loved ones often felt helpless watching me in pain and suffering. Equipping them with tools to assist me during tough times would have lightened the burden on everyone involved.

Furthermore, I'd advise not relying solely on medication. I'd stress that there are more ways to take care of one's well-being than just taking pills every morning. Emphasizing the importance of a balanced diet and a healthy lifestyle would have benefited me more than I knew at the time. I'd also encourage myself to find ways to practice self-care by reducing stress levels and granting myself grace. I'd remind my younger self that the road ahead was not easy, but I was stronger and more resilient than I realized.

Follow Keelie's journey on Instagram. 


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