Why I’m not a sickle cell warrior, despite fighting the disease

For a long time, I’ve been against the notion of being called a sickle cell warrior. I didn’t feel I deserved the title. A warrior, to me, is a skilled combatant who’s spent years developing a craft, like the Vikings who inspired my first column. Being a warrior, in my view, is a way of life you choose.

But I didn’t willingly choose my sickle cell fight. Over the years, in fact, I’ve had moments when I felt more like a hostage or victim of sickle cell than a combatant against it. Further, I’m supposed to be courageous and resilient to daily changes if I’m a sickle cell warrior, yet I can think of multiple times when I’ve faltered or succumbed to negative emotions or thoughts about my disease.

Last week, for example, I went to celebrate a wedding in the Bahamas. It was a fantastic event, and I was honored to attend. But while I love to travel, this time I needed two planes, two car rides, and a ferry to reach the private island venue. That made the journey draining and complicated, and my luggage and the 91-degree temperatures didn’t make it easier.

As a result, I was on high alert because tiredness, heat, and exhaustion are all factors that could trigger a crisis. I knew that if I had one in this location, I wouldn’t be able to get the help I needed. The stakes were high, and the wedding was a three-day event. I wanted to attend each part of it, and most importantly the ceremony, without any pain.

Recommended Reading

June 27, 2023 News by Lindsey Shapiro, PhD

Worldwide, sickle cell may be more deadly than thought, analysis finds

Knowing the grave consequences of a crisis and the private location made me second-guess every decision. I was consumed by how I was feeling on the first day. I constantly asked myself if I felt OK, had enough water, or should stop dancing.

These thoughts were overwhelming. On the surface I looked like I was enjoying myself, but inside I was struggling. How could I be so scared if I was supposed to be a warrior? When I doubt myself, I’m at my weakest and most vulnerable. The first night in the beautiful Bahamas, I felt the most crippling fear I’d felt in a while.

At my age, significant life events are common. For every event, is this fear what I’ll face? Will I continue to second-guess myself? To get out of the negative thoughts, I had to plug back into where I was and reach out to my support network. I held fast to positive thoughts and the environment, where I’d long wanted to travel, to bring me internal peace.

Once I spent Day 2 resting, I resumed the festivities and believed I’d be OK. I found courage because I’d done all I could to ensure I wouldn’t get into a crisis. At the same time, I also relinquished control because a crisis can be unpredictable.

In this way, I overcame my fears. Can I now proudly call myself a warrior? I don’t think so, because I know I’ll have more times like this trip. That said, I understand why my fellow patients are called warriors. Living with sickle cell means a daily battle with our bodies that can see us either rise or fall to the test.

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.