A Day in My Life as a Sickle Cell Warrior

I wanted to share what a typical day looks like for me as a sickle cell warrior. No two days are exactly the same—each day brings its own challenges—but there are some common threads that I think might give others a glimpse into my life and the resilience that living with this condition requires.

Mornings usually start early for me, around 5 AM, often with pain greeting me as I wake up. Unfortunately, there’s not much I can do about the pain at that hour. But before I even put my feet on the ground, I start my day with a prayer, setting my intentions and grounding myself in faith. After that, my morning can go one of two ways: I either head to the gym for a quick workout before work or I step into my “war room,” where I meditate or read scripture.

By 6:30 AM, I’m in the shower, playing morning meditation music or gospel tunes to help set a peaceful tone for the day. After my shower, I go through a gentle skincare routine because I believe you shouldn’t have to look like what you feel like. Even on days when the pain is relentless, I face the world with a smile. In my bathroom, I keep an Expo marker to write on the mirror each morning. I jot down what I’m grateful for and recite my affirmations to remind myself of my strength before heading to work.

As a sickler, I still work. I know that not every sickle cell warrior is able to do so, but for me, working isn’t just about making a living—it’s about maintaining the life I want for myself. Disability income just isn’t enough to keep a roof over your head, so like many others facing chronic conditions, I push through to maintain my independence. This is also why I don’t take stronger medications in the morning; I need to stay clear-headed to get through the workday. If the pain is too much, I might take an ibuprofen to take the edge off, but that’s it.

I work from home, which is a blessing, but I do miss the day-to-day interactions that come with being in an office. To help me stay focused, I listen to lo-fi music throughout the day. It keeps me calm and centered, even when the pain is present. I usually make breakfast around 9 or 10 AM—something simple like boiled eggs, toast, a bagel, or yogurt. It’s not just for me but also for Dana, my sister and fellow warrior.

Throughout the day, I manage my pain with whatever tools I can. I keep a heating blanket at my desk, along with a small heater, a back massager, and a foot massager to help with blood circulation. These small comforts make a huge difference when pain flares up unexpectedly.

Lunch is around 1 PM—again, something simple like a salad or a sandwich. After a quick break, I head back upstairs to finish my workday. As the workday winds down, I prepare dinner for myself, Dana, and my brother Chance. By this time, I’m usually able to take stronger pain medication if I don’t have to head out for my second job.

Yes, you read that right—I’m a sickler working two jobs. It’s not easy, and I often wonder how long I can keep up this pace. But right now, it’s a necessity. My second job is in person, and it requires me to be on my feet for most of the shift. By the time I come home, I’m often physically and emotionally drained.

Once home, I take a hot shower to soothe my muscles, say my nightly prayers, and make sure to journal. It’s important for me to end each day with gratitude, even when it’s been difficult. I remind myself of the blessings I have, and I try to read a chapter of a book before drifting off to sleep, preparing myself to do it all again the next day.

My journey has been anything but typical, but I remind myself constantly: I’m blessed. There’s power in looking at life through that lens, especially on the tough days. No, I may not have everything I want right now, but I am so much further than I ever imagined I’d be. Even when the pain is relentless, I remind myself—I’m blessed. I’m blessed to have a roommate like Chance, who brings me hope and laughter. On the days when our schedules align, we wind down together with a movie, sharing a little bit of joy at the end of the day. It’s a small comfort, but it means the world.

I dream of a day when I won’t need to work two jobs, when financial worries won’t hang over me, and life will be a bit easier. I know that day will come, and until then, I take it one day at a time, holding onto the hope that each day is a step closer to that future.

It’s that hope—and the belief that my story can inspire others—that keeps me going. I’ve faced more than my fair share of obstacles, but I’ve also learned that I’m stronger than I ever thought possible. Every morning I wake up, every night I close my eyes, I know that I’m fighting for a better tomorrow. And that’s something I’ll never give up on.

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Disclaimer:

The stories, experiences, and information shared on this blog are my personal views and should not be construed as professional advice. This is my personal journey, and it may not be applicable to everyone. Please consult a professional if you are seeking advice on specific health, financial, or legal matters.