How sickle cell disease has impacted my goals and dreams

Recently, I’ve been reflecting on how living with sickle cell disease has affected many of my dreams, goals, and lifestyle choices. Despite the changes, I have continued to dream and pursue my aspirations successfully.

The impact of sickle cell disease intensified for me during my early 20s. As a result, my journey through medical school became more stressful than anticipated, transforming it into a story of resilience, determination, and persistence.

One of my earliest dreams was to be a neurosurgeon. I can be very daring, but sickle cell disease has taught me to simmer down. As my complications mounted during medical school, I was forced to confront the harsh reality of my condition’s severity and adjust my aspirations accordingly. I briefly considered psychiatry but later opted for general practice after complications like avascular necrosis set in and limited my mobility.

I recall planning to marry in my mid-20s, but sickle cell has impacted my love life in various ways, and at some point, I gave up on finding love. Romance is allowed to come my way, but I am not searching or compromising my standards for it.

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The struggle to balance my career goals and caregiving responsibilities

I began driving at 18 when my parents gifted me a small car for college because of my health. However, sickle cell complications soon forced me to stop. A bone issue made driving painful and uncomfortable, so my parents hired a driver. Years later, they got me an automatic car, but by then, I was already overwhelmed with my health issues and school, and driving was the last thing on my mind.

After medical school, I enjoyed driving again during my internship. But soon, my body began to betray me. No matter how refreshed I felt every morning, after a few hours, I’d experience a disabling fatigue that was associated with muscle pain, poor concentration, and some other symptoms. If I persisted without addressing it, the fatigue would trigger an acute vaso-occlusive crisis.

The diagnosis of chronic fatigue syndrome was a harsh wake-up call. This condition significantly impaired my ability to cope with my daily life, forcing me to alter my priorities and make significant changes to my routine. One of the toughest decisions I had to make was to stop driving. It broke my heart, but I knew it was a necessary sacrifice to survive.

Additionally, I had to cut back on socializing to prioritize my job and conserve energy for work. I can’t remember the last time I visited close friends or family. They understand and come to visit me instead.

I now attend church services online instead of in person because of the severity of my chronic fatigue. If I’m not working, I typically stay at home to manage this highly disabling condition.

Because of my health, I have missed many important events in the lives of people I care about. Severe sickle cell disease can shut you away from the world, especially in adulthood. It’s a progressive disorder that gets worse with age.

I’m a sickle cell advocate and occasional content creator, but my health sometimes gets in the way of these roles. Fatigue and pain may force me to postpone video recordings until I’m feeling better.

Finding new goals and dreams

Although sickle cell disease forced me to let go of some dreams and alter my lifestyle, I’ve always found new passions to replace them. I’ve learned that with adaptability and resilience, happiness and fulfillment are still within reach.

When my health issues ruled out neurosurgery, I became a general practitioner instead, finding joy and purpose in this new path. When marriage took a back seat, I focused on self-love and nurturing relationships with family and friends.

Even when my health required more rest and time at home, I remained productive by creating a nonprofit organization that I can work on remotely, which benefits sickle cell patients globally. This gives me a profound sense of purpose and happiness. I’m also proud to have created Sickle Cell Celebs, a thriving online community for patients and caregivers. Through determination and creativity, anyone can find happiness and fulfillment despite life’s challenges.

Sometimes, as much as we love to hold on to our dreams, we need to be realistic about the state of our health. The main goal is living healthily and happily. Any dream that will worsen your health or shorten your lifespan is worth letting go of. You are not a loser because you let go of your dream. You are a survivor, a fighter, a proud sickle cell warrior. Hold your head high!

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.