How to Survive and Thrive With Sickle Cell While Managing School and Work Despite the Widespread Lack of Understanding About the Disease
Sickle cell disease isn’t just about battling debilitating pain crises, navigating the medical system or the challenges of trying to stay healthy, although all of that is important.
It’s also about coping with society’s ignorance about the chronic illness and how it affects both young and older sickle warriors because it starts early, during childhood at school and persists through adulthood on the job.
Sickle Cell Foundation of Georgia CEO Tabatha McGee is the host of a new TV series on the genetic blood disorder called “Unveiling Sickle Cell: Beyond the Pain.” She explores the educational and employment challenges warriors face in dealing with such widespread ignorance of sickle cell disease (SCD) with twins Angelique and Ashley Wilson.
These young adult sisters have had vastly different experiences navigating the same disease both within their own family and in the outside world.
Sometimes it’s easy to forget just how little people understand SCD and the toll it takes on those who have it.
For Angelique and Ashley, the challenges started early in school. Even though the women are twins, Ashley had more frequent pain crises, and her sister suspects it was due to the stoke Ashley had at 6 years old and that’s carried into adulthood.
“I go through more crises in general since we grew up,” she told McGee. And that’s still the case, which both sisters believe is related to stress.
The anxiety and worry started for them and for many warriors as children, beginning in school.
“So, growing up with sickle cell, in school, it was bittersweet for me personally, just not being able to do everything my friends could do,” Angelique admitted. “If we were going outside and it was too cold, of course I’m extra bundled up but sometimes teachers would say, ‘Your mom says you have to stay in. It’s too cold for you to go outside You have to do indoor recess’ and that can make you feel a certain way.”
Extreme temperatures and climate changes can bring on pain crises for warriors.
Ashley had a different experience she believes because the disease affected her more.
“First of all, being a twin, automatically, people compare, right? So, like, that comparison thing, I think that's why I dealt with, like, more esteem issues, because it was always the thing. They were like, Oh, well, who's the sick one?”
And classmates and even teachers would question why she frequently missed school.
“That would get me and make me feel like less than of a person, or like, less capable,” she explained.
She said it’s hard to explain the disease or why she was sick all the time as a child.
“I would try to explain it but when you're so young, you barely even know what it is yourself. You just know that your parents teach you you're different from the rest, so you have to do things that everybody can't do,” Ashley added.
Both women felt they were singled out as children by “frustrated teachers” who did not understand what SCD is and that made coping with the illness that much more difficult.
Then as adults, they both faced problems in the workplace because warriors need time off when they experience pain crises.
“I had a couple of jobs where I've been fortunate enough to have understanding managers or people that were higher up work with me,” Ashley said. “The last couple of years[though], I haven't been able to keep a job. I've lost several jobs, or even trying to even go out to get a job. No one is working with me. That's actually added to different stress and crises.”
The issues Ashley has faced on the employment front are unfortunately all too common for sickle cell warriors and without a job, SCD patients can find their lives quickly unraveling.
And then there’s the healthcare system. Shockingly so many doctors and nurses don’t understand SCD and the debilitating pain crises that land warriors in the hospitals.
McGee is reassuring with the two young women. One of the points of the Sickle Cell Foundation of Georgia’s new series “Unveiling Sickle Cell: Beyond the Pain,” is to help educate people on SCD and help people understand the challenges warriors face.
-By Shelby Lin Erdman