Employment loss is a phenomenon that thousands have experienced over the past year as COVID-19 arrived and took our lives by storm. The United States saw the unemployment rate reach nearly 15%, according to the U.S. Bureau of Labor Statistics. 

While many were laid off because of the ongoing pandemic, some people regularly face the harsh realities that exist between their health conditions and losing employment. Adults with sickle cell disease often fight to maintain stable employment because of how unpredictable the disease is and that it can cause long hospital stays. 

Ariana Dorrough, 24, is a part-time worker for Meijer, where she’s worked for a little more than a year. She experienced a sickle cell crisis last year while on the job, passing out on a bathroom floor. It was nearly 20 minutes until she was found by a customer, who then notified the staff. She was taken to the emergency room by an ambulance and spent four days in the hospital.

“There are a lot of rumors that they are planning to fire me because I have missed so many days. But every time I had missed days is because I was either, you know, sick or admitted into a hospital,” Dorrough said on Feb. 19 when speaking about her traumatic experience.

She said that she had papers to prove that she was in the hospital, but the staff told her they weren’t allowed to know her medical history.  

Those with sickle cell disease have a group of inherited blood cell disorders: C-shaped blood cells that die quickly, making blood flow difficult as the cells clog vessels and cause pain, including acute chest syndrome and sometimes stroke. 

Ronald “LeRon Rilla” Haynes, 29, experienced acute chest syndrome when he worked at a security company back in 2018, “I ended up having to be admitted for two weeks and they tried to fire me again. But luckily I was in a union.” 

Haynes said that during one sickle cell crisis, he wasn’t able to communicate that he’d been hospitalized because his phone was taken. He was able to talk to his supervisor only an hour before the start of his shift to say that he wouldn’t be able to make it in. 

“She took it upon herself to count that as a no-call, no-show. So I was actually suspended for that,” he said.

Bouncing from job to job is typical for those with sickle cell, although Illinois’ Family and Medical Leave Act (FMLA) allows eligible employees to take 12 weeks of unpaid leave for health reasons. However, FMLA has to be accrued within a company for those who have worked 1,250 hours for 12 months. Those with sickle cell rarely can accumulate this time because they tend to be hospitalized more than their co-workers. 

Sickle cell is unique in that sometimes you have flare-ups that prevent you from working, but they don’t happen regularly enough to sustain disability benefits. According to the Social Security Administration, a disability is defined as “you must not be able to engage in any substantial gainful activity (SGA) because of a medically-determinable physical or mental impairment(s) that is either: expected to result in death, has lasted or is expected to last for a continuous period of at least 12 months.”

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Samantha Nathan, 26, a part-time unarmed security guard, has never been at a job for more than a year. She doesn’t want to deal with the backlash that comes from a job when experiencing a sickle cell crisis and believes it’s easier to just find another job.

Nathan said she first applied for disability when she had her first child in 2014. She kept having her disability denied and continued to appeal until it was accepted, which is something she learned she had to do when it came to Social Security. 

“From what I’ve been told, you keep on applying until they approve you… But I don’t know why it is. It’s just the way it is,” Nathan said. “And I just feel like they want you to basically give up in a way.”

Nathan said she sees a lot of people get discouraged when they get denied, not understanding why and not knowing they can keep appealing for a different decision. “They just think there’s nothing they can do about it,” she noted.

Haynes gave up on applying for disability when he realized he had to go through too much to prove eligibility. “So when I turned 17, I became my own legal guardian. So I had to get reevaluated for sickle cell. And I went to the Social Security place and you have to prove your sickness and your inability to work.” 

Nathan thinks the system drives people to do under-the-table jobs, those that pay in cash and eliminate government forms because it’s a way for people to work and keep their disability benefits. 

“It’s kind of like when you have undocumented immigrants that are not supposed to be in the U.S. They know those people are going to work and get paid less than most people. It’s a plus on one end, but it’s like a slave on another end,” Nathan said. She believes it is unfair that if you make more than $1,200 a month, you’re no longer eligible for the benefits.

Dorrough has never applied for disability. Instead, when she’s out of work, she goes the unemployment route, while also relying on her side hustle:: doing hair to make money. 

When asked how she thinks employers could better serve those with sickle cell, Dorrough said employers need to be more sympathetic and understanding of their condition. She thinks there needs to be a way that they are accommodated for hospital stays. 

Haynes asserted that jobs should tailor sick time to a person’s medical condition. He doesn’t think sick time should be used against a person with sickle cell who experiences hospitalizations often. 

Nathan said the government shouldn’t limit the amount of money you can make while on disability. 

“Obviously, the money they give us is not going to be enough to cover bills and everyday necessities,” she said. “For people to have to make it off just these few dollars a month, I just feel like that’s wrong.”

is a freelance contributor for The TRiiBE.