Tips for working and keeping a job with sickle cell disease

Keeping a job while living with sickle cell disease (SCD) can be challenging, especially when you have moderate to severe disease. Symptoms and complications can make it harder to maintain regular work hours or remain in a demanding career.

For many warriors, unemployment and financial hardship can add to the emotional burden of living with SCD. Struggling to find or keep suitable employment can feel particularly painful after years of studying, learning a skill, or making sacrifices to build a career.

I am grateful to God that I am a doctor with an employer and colleagues who understand SCD and its unpredictable nature. Their support has helped me remain employed while managing my health.

Recommended Reading

Aug. 2, 2024 Columns by Mary Shaniqua

Returning to work after an illness requires a considered approach

Earlier in my career, one challenge I faced involved wheelchair accessibility. I had to change departments because my preferred department couldn’t accommodate my wheelchair. Although this switch was difficult, I found a way to continue my career.

My biggest challenge came when I developed chronic pain and chronic fatigue syndrome at age 32. I realized working for several hours every day triggered chronic pain for me.

Whenever I ignored my body’s warning signs, the chronic pain would trigger an acute crisis. I consulted my hematologist, who created a care plan for me, but those measures did not provide relief. Eventually, I had to reduce my working hours and do one less day of on-site clinical work each week.

That adjustment gave my body time to recover. It also helped me continue working without repeatedly pushing myself beyond my limits.

Chronic fatigue syndrome created another challenge. I’d feel strong in the morning but become extremely tired after about three hours of work. Moderate muscle pain and brain fog accompanied the fatigue.

Taking breaks during work became important for me. When I allowed my body to rest a bit, I could often return to my responsibilities.

I also remember being bedridden for more than a year because of avascular necrosis, a complication associated with SCD. Even during that period, my employer and colleagues continued to support me.

Their understanding made a significant difference. They allowed me to take a break whenever fatigue became overwhelming, which was a game-changer for me.

However, not every warrior has this kind of support. Frequent hospital admissions can make consistent employment difficult. Sickle cell complications can also affect how much work you can manage. In Nigeria, where I live, and many other African countries, access to disability-related financial support remains limited.

These challenges can create a difficult cycle. Unemployment can contribute to financial hardship, which can add psychosocial stress to life with SCD.

Should you tell your employer about sickle cell disease?

Many people living with SCD ask whether they should tell their employer about their health. The answer depends on your circumstances, symptoms, and workplace.

If your disease is mild and rarely affects your ability to work, you may choose not to disclose your diagnosis. However, frequent hospital admissions or significant complications may make disclosure more useful.

Sharing your diagnosis may help your employer understand unexpected absences or requests for reasonable accommodations. Still, workplace policies and legal protections differ by country, so you may want to understand your rights before making that decision.

For me, there is nothing to hide. As a sickle cell advocate, I am proud of my strength and the scars that tell part of my story.

Creating more supportive workplaces

Today, I advocate for greater workplace education about SCD. Employers and co-workers need to understand that symptoms can vary from one day to the next.

For example, someone experiencing significant fatigue may need a short rest during the workday. That flexibility may allow them to recover and continue their responsibilities.

Flexible employment can also create more opportunities. Remote work may help some warriors manage symptoms while maintaining their careers. Self-employment may provide another option for those who need greater control over their schedules.

I also encourage warriors to consider their health when choosing courses, careers, and skills. A career that offers flexibility may be more sustainable than one with physically demanding duties or rigid schedules.

Personally, reducing my working hours and taking flexible remote opportunities have helped me remain gainfully employed while managing significant sickle cell complications.

Living with SCD should not mean giving up on your career. With understanding employers, appropriate accommodations, and flexible employment options, more warriors can build sustainable careers while caring for their health.

For me, sharing my experience is also part of my advocacy. I will continue preaching the gospel of SCD to promote prevention, support better disease management, improve quality of life, and reduce stigma.

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.