Sickle Cell Awareness Month — Princess

Transcript from a conversation recorded 9/16/20

please excuse any typos. link to listen to the recording of this transcript here

Beyond Our Cells is a podcast where I, Taylor Camille, We’re continuing our series for Sickle Cell Awareness month Sickle Cell Disease is the most commonly inherited blood disorder in the United States affecting an estimated a hundred thousand Americans It occurs primarily in African Americans although it can be seen in other races as well however, one in 500 African Americans have the disease. I am one of the ones in 500 and so this particular disease is very close to home for me.

In a series of letters, we’ll hear from other people with sickle cell each week of September and then in October, we’ll pick up where we left off this season, talking to Black men share stories by those living a life fully and beyond any stigma or perceived limitations a health condition may have on their day to day lives. As always, please share and subscribe if you haven’t already.

We’re continuing our series for Sickle Cell Awareness month Sickle Cell Disease is the most commonly inherited blood disorder in the United States affecting an estimated a hundred thousand Americans It occurs primarily in African Americans although it can be seen in other races as well however, one in 500 African Americans have the disease. I am one of the ones in 500 and so this particular disease is very close to home for me.

In a series of letters, we’ll hear from other people with sickle cell each week of September and then in October, we’ll pick up where we left off this season, talking to Black men.

Today, we have a reflection from Princess on her life with Sickle Cell. Princess and I’s paths crossed just from what my friends would call my internet sleuthing. It’s a common theme in this podcast and she agreed to spend some time to reflect on your experience and share it with us.

Here’s Princess’s reflection in her own words:

What better time to talk about Sickle Cell than Sickle Cell Awareness month. So when I was born, the doctors at the hospital told my mom that I probably wouldn’t live long, crazy, right? Without giving my parents a lot of resources, they were left to care for me without, you know, knowing much about the disease.

That was in 1994. And there’s still a lot of people that don’t know about this disease. Now, Sickle Cell affects many people, but it’s not as known as other diseases. Every day is a constant battle with it. I have to make sure I drink plenty of water, I get a lot of sleep, not over exert myself and I get too stressed out, which let’s be honest, that’s difficult.

Especially if you’re a young adult and a creative like me. I’m blessed to not experience a lot of crises, like others with SS, but I do get pain often, almost every day, whether it’s back pain, joint pain, or extreme cramps during that time of the month. And one of the main things sicklers experience is chronic pain.

A lot of people can’t tell when I’m in pain, but that’s because I’ve gotten better at handling it and managing it. That means a lot of medications, which in turn can give us a multitude of other problems, like insomnia, memory loss, nausea, fatigue, a lot more. So when sicklers do get pain, we’re managing it with opioids, which isn’t the best. Yes, it gets rid of the pain or it makes it more manageable, but it definitely has its side effects. That’s why a lot of people turn to medical marijuana. Another thing I do personally is get blood transfusions because my hemoglobin always drops no matter what I do. And besides that chronic pain, we’re also dealing with crises, which puts us in the hospital for days or even weeks at a time, the pain is intense.

I even hear worse than giving birth, but until I’m there, this is definitely the worst pain that I’ve experienced and it can come at any time. Everyone is different though, and everyone has their triggers for me, it’s stress, traveling and the cold. So me and air conditioning do not get along. When we’re in the hospital, you know, there’s always those that doubt yourpain or think that they know your body better than you, and that can feel diminishing.

There’s definitely a lot that needs to be improved when it comes to treating sicklers. My main advice would be just to listen and believe us. If we say we’re in pain, we’re definitely in pain. It’s not always about the numbers. I do always get asked about my eyes because people think it means I’m about to get sick, but that’s not always the case.

I have jaundice of my eyes and sometimes it really gets prevalent. They get really yellow. Honestly, if I had a dollar for every time someone asked me why my, eyes are yellow, I’d be rich. And it’s definitely affected my attitude towards people because, you know, I struggle with eye contact and my sickle cell has kept me from other things as well like going out with friends, job opportunities, doing strenuous activities, drinking, you know, and just, there’s a lot of other things, but I don’t let that define me. I try and take that pain and that pushed me to do the things that I love. It may take me longer to do it, but, you know, I just don’t let it stop me.

With my family and, you know, my close friends, like always supporting me. I owe it to them and to myself, you know, to reach my full potential. Whenever I doubt myself or I’m feeling down, I just repeat the Bible verse Philippians 4:13. And whenever I pray, I just, I feel better. And I get the strength to go on as a Sickle Cell warrior.

You know, I hope more people will be aware of the disease and how it affects them every day. And even if we’re not showing it, I would love to see more support. And I want the stigma around it to become more positive because we’re strong people. I wasn’t always so forward with disclosing my Sickle Cell because of the stigma that I felt was around it.

But as I’ve gotten older, I’ve become more aware and I know that it makes me stronger and it makes me a better person overall, because I know what it’s like to fight a silent battle every day.

Thank you for listening. We’ll be back next week with more reflections on sickle cell.

Beyond Our Cells is an original series produced and hosted by me Taylor Camille, a variety of the series artwork shared here and on our Instagram @beyondourcells are created by Carmen Johns and Sierra Hood. My hope is that these listening’s have left you with a warm heart and an even cooler mind. I hope you are left feeling able to seek peace in the spaces and places you may find yourself in.

If you’re interested in being on the pod or have any compelling leads, please shoot us an email at info@beyondourcells.com and subscribe and share if you haven’t already.

Check out our feature on Well & Good here