Columns

Having a condition like sickle cell disease can bring a lot of bad days. Crisis pain and extreme fatigue can be unbearable. Sometimes it feels like there are more bad days than good ones, as my collection of past traumas tends to resurface in my mind. However, I’ve recently…

Health-related stigma, as I discussed in my last column, is not the only stigma that afflicts those with sickle cell disease. There’s another stigma attached to it, one more localized, that can still have a detrimental effect on the patient. I’ll refer to this as culturally influenced…

In my last column, I provided some caregiving tips to help people support loved ones with sickle cell disease. One thing I suggested is having a crisis care plan in place, though I haven’t yet prepared one myself. The goal is to help those who are unfamiliar with…

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…

Disease representation is essential in all aspects of life. Over the years, I’ve noted a few mentions of sickle cell disease in mainstream media by celebrities. I’ll never forget hearing “Hidden Pain” by A Star when it was released in 2019. It was the first time…

Living with sickle cell disease means dealing with constant fatigue and painful vaso-occlusive crises. These symptoms can impede on a normal life with wide-reaching implications, such as limiting social or work capabilities. Unfortunately, sickle cell also carries a stigma, both in life and within healthcare communities. Getting…

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 have been a volunteer for a charity organization called Give Blood Spread Love for a couple years. We drop in on people at their work and other community establishments to raise awareness about sickle cell disease and blood donation. During these sessions, I speak about the different…

I strongly advocate for mental health and well-being because I have seen the personal benefits of it. By paying attention to these issues in my life, my overall mood has improved, I’ve become more confident, and I’ve been physically able to keep up with the demands of everyday life.

At the start of the year, I challenged myself to have zero sickle cell crises. I knew this goal was ambitious and something I’d never done as an adult, but I wanted to try. Putting it out there in the universe was my way of holding myself accountable.