Don’t let sickle cell pain crises keep you from setting goals
Living with purpose makes the disease journey more meaningful
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Pursuing a purposeful life while living with moderate to severe sickle cell disease can be very tough, as it presents a unique set of challenges. When the pain is frequent and the complications are real, it’s easy to lose track of one’s goals. However, I’ve learned that living with purpose makes the journey more meaningful.
You have to remain intentional about your goals. Without goals to pursue, it’s easy to slip into a state of hopelessness, which can quickly turn into depression.
Throughout my life, I have had to drop some of my goals because of my severe disease, but I have never stopped picking up new, fulfilling ones. I often hear advocates and motivational speakers claim that sickle cell disease shouldn’t affect your dreams at all. While I admire their optimism, I find that perspective not entirely realistic for everyone.
Sickle cell affects people differently. Some live with mild forms and experience few or no symptoms. Their lives remain largely unaffected. But for those of us with moderate to severe disease, sickle cell and its complications often dictate our plans, goals, and daily routines. We have to live with the unpredictability of crises, fatigue, and complications while finding ways to keep moving forward.
As some dreams are dashed, others are born
Sickle cell disease affected my plans right from childhood. I can remember having to miss classes because of painful vaso-occlusive crises. My sister and I once visited a family friend for the holidays, but I couldn’t sleep through the night due to a sickle cell crisis. We had to end the trip within 24 hours, and I was rushed back home to my parents.
Another memory that stands out vividly is when I was preparing for a national Bible quiz. My friend and I had already won at the local and state levels. We were certain we would take the national trophy. Instead, a crisis reared its ugly head. I spent the competition period in a hospital bed, watching a dream we had worked so hard for slip away.
During my late teens, after high school, I set my sights on a pre-degree course. Just as my exam began, a vaso-occlusive crisis struck. I could barely grip a pen with my right hand. Eventually, the pain forced me to stop writing altogether. My scores suffered, and the university denied me my first-choice course. Yet, I refused to relent. I kept pushing until I finally gained admission to study the program I desired: medicine and surgery.
As a teenager, I dreamed of becoming a neurosurgeon. Looking back, I think sickle cell and its complications were laughing at me and that specific ambition. Eventually, I realized that the grueling physical demands of neurosurgery would destroy my health. I chose to end that dream, but I never let go of my desire to be a practicing physician.
Never leave yourself without a goal
Medical school tested my resolve. Different people advised me to quit for my health. But I knew that achieving this goal was the key to my happiness. If I had given up, I’d have lost more than a dream; I’d have lost my sense of purpose. My dad raised me to be a doctor; he bought me biology, physics, and chemistry books when I was still in junior school. I have loved and held on to that dream my whole life. It was my dad’s dream, but it was my dream too, a dream I always looked forward to achieving, and I never allowed sickle cell disease to take it away from me.
Every time I let go of one goal, I replaced it with another fulfilling one. When neurosurgery became unrealistic, I chose to be a general practitioner. Later, I expanded my vision and became a physician executive and an award-winning sickle cell advocate. I founded the Sicklelive Foundation and Sickle Cell Celebs to educate, empower, and improve the quality of life for people living with sickle cell disease like me.
Recently, I have set new goals, completing another degree and publishing my first book on sickle cell.
Living with sickle cell disease has taught me that it’s OK to let go of certain dreams when they no longer align with your health or reality. What’s not OK is living without purpose. When one dream ends, replace it with another meaningful and achievable one. Purpose keeps you alive, motivated, and fulfilled.
Never leave yourself without a goal. Keep dreaming. Keep striving, and keep thriving despite sickle cell disease. You can do it. I am doing it too.
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 about sickle cell disease.
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