How workplace accommodations help people with sickle cell disease thrive
Becoming sick should not automatically put someone’s livelihood at risk
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When I joined Bionews, the publisher of this website, in 2023 as a freelance sickle cell disease (SCD) columnist, I experienced something that stayed with me. As someone living with a rare disease, I wasn’t the only person like me in the workplace. Several colleagues also lived with chronic or rare diseases. People living with rare diseases interviewed me during the hiring process. After I joined the company, I realized that many more colleagues also lived with rare diseases. They all bring valuable skills to their roles and contribute meaningfully to the organization.
That experience differed from what I had encountered previously. As a medical doctor, I was often the only person living with a visible rare disease in a professional setting. Seeing colleagues with similar experiences work, contribute, and excel challenged the stigma I had encountered for years. In particular, their experiences challenged the assumption that a rare disease automatically makes someone unproductive or unemployable. This was one of the things I valued most about working with Bionews.
I also approach my own organization in a similar way. I create opportunities for more people living with SCD because I know a diagnosis doesn’t always determine someone’s intelligence, skills, ambition, or productivity.
Removing unnecessary barriers
People living with SCD can become highly skilled and productive employees. However, workplaces need to understand the realities of chronic conditions and remove unnecessary barriers. For me, even a short break can make a meaningful difference when chronic fatigue or pain sets in. That allows me to return to work refreshed and able to concentrate. As a doctor, I have sometimes had access to call rooms where I could rest when fatigue or pain affected me at work.
However, many employees living with SCD do not have that option. Some workplaces may not even make it easy for them to take a water break, let alone a rest break.
Accessibility matters, too. Earlier in my career, I changed departments because my initial work environment couldn’t accommodate my walking aids and wheelchair. That experience taught me that workplace inclusion involves more than hiring someone with a disability. The physical environment must also allow employees to move safely and participate fully. Therefore, employers need to consider accessibility as part of workplace inclusion rather than an afterthought.
Remote and hybrid work can provide another pathway to inclusion. For some people with SCD or other rare diseases, flexible arrangements can reduce barriers related to commuting, mobility, fatigue, or fluctuating health needs. Where the nature of a job allows it, these options can help talented employees remain engaged and productive. At the same time, employers can explore other reasonable accommodations based on individual needs.
Employers also need to understand that SCD can be an invisible disability. Someone may look well while experiencing significant fatigue, pain, or other complications. The absence of visible signs doesn’t mean the person faces no health challenges. For this reason, workplace policies should focus on employees’ needs rather than appearances.
People living with SCD also need take advantage of sick leave when they become unwell. Becoming sick should not automatically put someone’s livelihood at risk. Reasonable accommodations and appropriate policies can help employees manage their health while maintaining their careers.
For people whose complications eventually prevent them from working, stronger social protections also matter. Disability benefits can provide an important financial safety net for people who can’t earn an income because of disability or health conditions.
Yet many African countries have limited systems of disability income support. As a result, many people lack adequate financial protection when illness or disability affects their ability to work.
We cannot talk meaningfully about health equity while ignoring what happens in the workplace to people with chronic and rare diseases. Employers can help change that. They can create accessible environments, offer flexible arrangements where possible, and provide reasonable accommodations. They can also evaluate employees based on their skills and contributions rather than assumptions about their diagnoses.
People with SCD and other rare diseases have qualifications, talents, ideas, and ambitions. Given the right environment, they can contribute to organizations, build careers, and help businesses grow.
I have seen this personally. I know what it means to enter a workplace and realize that I am not the only person like me. I have also seen how powerful it can be when organizations create opportunities for people who are often overlooked.
Ultimately, inclusion is not about lowering standards. Instead, it means removing unnecessary barriers so people have a fair opportunity to meet those standards. People with SCD and other rare diseases deserve that opportunity. More importantly, workplaces that provide it may discover just how much talent they have been missing.
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.
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