As I reflect on my life’s journey with sickle cell disease, I’ve concluded that one of the most important factors in managing it is having a sound support system. A great support system has made the journey easier and the load lighter for me, alleviating some of my challenges.

I can’t think of one area of my life that isn’t affected by sickle cell disease — a reality that can easily become overwhelming and emotionally draining. That’s why a strong support system is imperative. A support system refers to a network of people who are active and present…

I have written about learning to appreciate those who support me on my journey with sickle cell disease. My support network plays a pivotal role in advocating for me when I’m in pain and unable to communicate. Additionally, they care for me during my recovery. Without my support…

Every day I make a thousand and one micro-decisions to manage my health with sickle cell disease and avoid having a vaso-occlusive crisis. Most of these decisions are automatic, subconscious actions based on years of experience and learned behavior to prevent a crisis. For example, I’m always…

I struggle with the fear of letting others down. For example, suppose someone scheduled a work meeting that is inconvenient for me. I’ll do anything to make sure I attend instead of suggesting an alternative. Of course, offering an alternative doesn’t mean no or that they won’t work with…

Representation of different people in all areas of society is key to empowering the next generation. Having a role model that looks or talks like you validates your own experience. But as a Black man with a chronic condition, role models in my community were few and far between. For…

I’ve often considered myself unlucky to carry the burden of sickle cell disease, which sometimes seems insurmountable. The journey can be isolating. I have aches and pains that nobody can see and emotions I’m still learning to process. In many situations, I’m constantly thinking about myself, particularly how to avoid…

Advocating for the sickle cell disease community means drawing on my experiences to help communicate the issues its members are facing, and to attract, engage, and educate a general audience. But this takes a toll on me, as many of my memories are unpleasant and traumatic. Even so, I continue…

I often underestimate how much I have learned about sickle cell over the years. To live with a chronic condition, one must understand all the symptoms and side effects that come with it. However, these lessons aren’t freely given — there isn’t a handbook for living with sickle cell. I…

September always reminds me of preparing for a new school year. It’s been a while since I’ve had to do that, so I have long since fallen out of the habit. However, I have not forgotten the feeling of new stationary or shopping for things to take to college. One…