Telling My Employer About Sickle Cell Disease Was the Right Decision

I didn’t reveal that I had sickle cell disease when I started my first job here in the U.K. As a new college graduate, and with the odds stacked against me because I had no previous work experience, I didn’t want my health condition to also affect my employment opportunities.

But a month after landing my first job, I ended up having a crisis. I overexerted myself on a Friday and spent the weekend trying to recover. Because I hadn’t told my employer about my illness, I felt like I had to come up with a reason for taking a few days off. Ultimately, I forced myself to go back into the office too soon because I was scared I would lose my job if I took too much time off.

The crisis was in my legs, which meant I could barely walk around. My manager noticed the change in my behavior, so I told the truth. I didn’t want to be seen in a bad light, but I couldn’t pretend I didn’t have sickle cell disease.

Telling my employer about sickle cell was one of my first lessons about being honest about my condition, and it turned out to be a transformational moment for me in my ability to talk about my illness, advocate on my behalf, and educate others about sickle cell disease. I even kept my job, and it led to better working conditions for me.

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Better working conditions

I have learned that I must be in an environment that helps me maintain my health as much as possible so that I can be productive, and I am learning to insist on these things.

For instance, air conditioning and poor heating systems can result in temperature fluctuations that can trigger a sickle cell crisis. My employer was willing to work with me to make sure the temperature in my work area was regulated properly to avoid getting triggered.

I was also able to advocate for working remotely and for flexible hours, although that took a bit more time and convincing.

The COVID-19 pandemic has shown that employees in some occupations can be just as productive working from home as they are in an office. Having the ability to work remotely meant that I could still contribute during bouts of fatigue or if I was experiencing a crisis, which would have forced me to take time off work had I been in the office. Additionally, flexible working hours meant I could meet appointments and prioritize my healthcare while still getting my hours in.

Opening up and telling my employer about sickle cell disease was difficult, but necessary. While I didn’t want to have to explain my illness, I realized that my employer wouldn’t know what to do without my advocating for myself; there just wasn’t enough information out there at the time to help employers understand what employing a person with sickle cell disease entails. It fell to me to communicate my needs and speak up on my behalf.

What advice do you have for employers of patients with sickle cell disease? Please share in the comments below. 

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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.