Guest Voice: My biggest wish as a sickle cell warrior is to be seen

My name is Whitney Smith. I am 41 years old, an aspiring voice-over performer, roller coaster enthusiast, foodie, and animation lover. My hobbies include bike riding, Jet Skiing, traveling, playing board and video games, and collecting vintage toys. I live my life to the fullest, and I do it while living with sickle cell disease.

Living with an invisible chronic illness is challenging, especially when having to make tough decisions about the simplest matters. When I experience a sickle cell crisis, nothing else is on my mind but getting the most relief possible. There’s no working or paying bills, and not even wanting to eat because the pain is so unbearable.

I try to live life as normal as possible. I work a part-time job, run errands, travel whenever I can, and have fun as much as possible.

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Living with sickle cell disease also means frequent doctor appointments and hospitalizations. When I’m in the hospital, I have to deal with the financial strain of missing work. This disease doesn’t consider things like bills and daily responsibilities. I live with my mother, who sometimes helps me financially when I’m struggling. Still, I try to be as independent as I can. There are days when all I want to do is lie in bed, but I have to push through it and not let my disease control my life.

Whitney Smith receives a visit from a special guest while in the hospital during a sickle cell crisis. (Courtesy of Whitney Smith)

I find it difficult to balance my health with my family’s needs. Because I’m always in pain, it becomes taxing to do the simplest things, like shopping for groceries, let alone doing something fun.

Then there’s dealing with the healthcare system. I’ve dealt with discrimination, medical gaslighting, and endless stigma as a sickle cell patient, and I know plenty of others in my community who have experienced the same things. Some medical professionals still don’t know what sickle cell disease is or how to treat it, which frustrates me every time I encounter them.

The stigma about sickle cell patients can be common in healthcare settings. This type of ignorance is what makes sickle cell warriors afraid to even go to the hospital.

I’ve been in the middle of a sickle cell crisis, sitting for hours in the emergency department waiting room, only for my symptoms to be ignored. I have documents outlining the protocol that ER staff should follow when a sickle cell warrior comes in. But I’ve had experiences when they don’t do that. No one understands just how painful a crisis is until they’ve experienced it themselves. As sickle cell warriors, all we want is to be seen, heard, validated, and not judged.

I’m taking all of these experiences and using them to become an advocate for other warriors in my community. My dream is to create a stuffed animal or doll that represents sickle cell disease, which could be a powerful symbol of awareness. The proceeds would go to the Sickle Cell Disease Foundation for research and publicity that people living with this horrible disease desperately need and deserve.

I’d also love to have a show that demonstrates what it’s like to live with sickle cell disease while trying to maintain a “normal” life. Representation matters, and I hope to turn this idea into a reality one day.

This disease gets so much disrespect. But sickle cell disease is just as serious and important as any other chronic illness. We sickle cell warriors need more compassion and empathy.

To submit your own Guest Voice for publication on Sickle Cell Disease News, please email your idea to our community editorial manager at [email protected] with the following included in the subject line: “Guest Voice: Sickle Cell Disease News.”

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.