Reflecting on a year of choosing myself while living with sickle cell disease

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As the new year begins, I’ve been reflecting deeply on all that happened in 2025. Living with sickle cell disease has never been easy, but last year marked a decisive shift for me. For the first time in a long while, I stopped allowing the condition to dictate every decision I made about my life.

The year began with travel, first to the United States, and then to Mexico. Experiencing new cultures and cuisines brought me immense joy. Over the years, I’ve become a true foodie; discovering new foods is one of the ways I connect with the world. My travels reminded me that pleasure, curiosity, and adventure still belong in my life.

I also spent the year celebrating the people I love, including weddings, birthdays, and important milestones. These moments were special not only because I was present for others, but also because I was learning to be present for myself. I’ve become far more intentional about prioritizing my health without guilt or explanation.

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In terms of health, 2025 was my strongest year yet. Working with a personal trainer gave me structure, accountability, and confidence in my body. For years, I avoided leg workouts due to knee pain, but by starting slowly and building over time, I’ve increased my strength and significantly reduced that pain.

Exercise has been transformative for me both physically and mentally, teaching me that progress with sickle cell doesn’t have to be extreme to be meaningful. None of this growth happened in isolation. My support system has been incredible, checking in on me and supporting my healthier choices. In the past, I felt pressure to hide my condition and pretend I could keep up with lifestyles that weren’t good for me. Now, I feel grounded in doing what’s best for my body, openly and unapologetically. That shift alone has changed how I experience life.

I’m deeply grateful for the many days I spent outside the hospital last year. But this also caused my relationship with sickle cell advocacy to evolve. Much of my earlier writing focused on pain, physical crises, mental fatigue, and spiritual struggles. In 2025, I began exploring something different: the day-to-day realities of living with a chronic condition and the internal work required to live well.

My plan for 2026

As I look to the future, my focus is clear: I want to prevent crises, rather than simply react to them. That means rest, balance, regular checkups, and listening to my body without guilt. I wouldn’t say that it’s a new year, new me, but more of an evolution — a version of me that still shows up, still grows, but no longer sacrifices health for resilience.

Even without major crises, sickle cell remains present in quieter ways. Some subtle signals and moments require attention, and I’m learning to respect those. The difference now is that I’m no longer operating from anger, sadness, or isolation. Instead, I’m discovering what life can look like when those emotions loosen their grip, when joy, intention, and possibility take the lead.

I’m learning how to live fully with sickle cell, rather than constantly resisting it. I’m stepping into this new year with hope, self-trust, and a renewed commitment to advocacy, starting with advocating for myself.

Authors
Dunstan Nicol-Wilson