5 Women Share Their Experiences Living With Sickle Cell

Real AF is an anonymous series that explores the interesting lives of Nigerian women, because we all have stories to tell.

Sickle cell is a blood disorder where blood cells contort into a sickle shape, as opposed to it’s usual flat disk shape. This causes the cells to die early, leaving a shortage of healthy red blood cells and blockage of blood flow in the body, which causes excruciating pain (known as sickle cell crisis.) June 19th has been set aside as World Sickle Cell Awareness Day to shed the light on the challenges Sickle Cell patients and their caregivers face everyday.

We spoke to 5 women about their experiences living with the inherited blood disorder. From activities that help them through their toughest days, to Sickle Cell myths that need to be debunked. Today, we celebrate all Sickle Cell warriors around the world.

Chioma, 23

Sickle Cell is not a death sentence if it is properly managed by professional and certified medical practitioners. The downside to living with it however, is the stigma, frequent crisis, fear of body organs getting damaged and of course, death. A myth that needs to change is that Sickle Cell patients are drug addicts. It really is a lot of acute pain we go through over other day. Personally, to take my mind off the crippling pain, I listen to music. One thing I hope to see change is, more people educating themselves on Sickle Cell and how to handle people living with it. Be Sickle Cell smart, basically.

Luzibu, 26

Sickle Cell is that crazy, jealous ex who doesn’t leave you alone and has a real talent for causing you physical and emotional pain. The most difficult part for me is the constant anxiety of worrying about my health. I have to think about my body and possible illness with any decision I make. This includes going to a party, getting a job, traveling, or exercise. Not only do I have to worry about triggering Sickle Cell crisis, but I’m also susceptible to catching other illnesses from people which causes me to deal with longer recovery and possible infection. Considering all of the variables is exhausting. The issue with Sickle Cell isn’t that this illness is rare, but that it affects mostly black and brown people which results in less research, fewer treatment options, and disappointing awareness. I like to distract myself with low impact things I enjoy, like reading and YouTube videos. I’d like to thank the 21 Magazine for caring and educating others about Sickle Cell and the people living with it. We need more awareness and listening to, and sharing our stories is a great start.

Vanessa, 26

Sickle Cell is like a darkness that would never leave. Dating is the absolute hardest thing to do, in my opinion. Everyone seems to think that they would have to take care of me in the medical aspect, but in reality I’ve been taking care of myself medically since I was 15 with no help. So yeah, dating is hard. Its like, people like me until they find out about my blood disorder. I can’t seem to find that one special person that will accept all of me for who I am. A Sickle Cell myth is that we all die young, or that we are drug seekers and that’s not the case at all. People will never understand how bad this pain can be and what we go through on a day-to-day basis. To cope with hard days, I’ve recently taken up roller skating. I hope I can stick with it this summer without hurting too badly.

Oluwatosin, 19

The hardest part of living with Sickle Cell is stress and the cold weather. I have generally had good experiences with healthcare providers and one thing that keeps me going on my tough days, is calm music. It’s not easy having Sickle Cell, so my advice to other warriors is to keep pushing. Turn deaf ears to what people say because people will say a lot of crazy things like you’re lazy or you’re pretending. Juts do your best to eat healthy, avoid strenuous exercises and as much as you can, cold places.

Kelsey, 24

The randomness of Sickle Cell pain is hard. Dealing with healthcare providers was great in the beginning but it got harder as I got older because sometimes, your insurance doesn’t always cover what you need. People think that only black people get Sickle Cell but it’s not true. I am mixed race and I know of other ethnicities with this disorder. I think Sickle Cell needs more exposure and anyone living with it shouldn’t feel ashamed for it. We are people too.