How workplace adjustments allow us to contribute on an equal footing
Managing a disability isn't the same as being absent from work by choice
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As Sickle Cell Awareness Month winds down, it’s worth recognizing the vital role that employment can play in the long-term health and well-being of disabled people.
Work provides far more than a salary. It offers independence, purpose, routine, social connection, and opportunities for growth. However, these benefits are only truly accessible when employers create environments that enable people to manage their condition safely.
For people with sickle cell disease, remaining employed can support both financial stability and mental well-being, while helping us maintain a sense of identity beyond our condition. The more employers understand sickle cell disease and the barriers people face, the better equipped they are to make simple adjustments that allow talented individuals to build sustainable and fulfilling careers.
Workplace adjustments can be the difference between someone thriving in their career and being forced out of work altogether. At the start of my career, the approach of employers at the time to my need for adjustments was to question whether I was competent enough to work. In contrast, in subsequent years, I’ve managed to cultivate a successful full-time career due to helpful and reasonable adjustments.
Simple and effective solutions
When people talk about workplace adjustments, they are often framed as extra benefits or special accommodations. For me, they are neither. They are simply the tools that allow me to do my job effectively and contribute on an equal footing with my colleagues.
One of the most significant symptoms I experience is fatigue. It can be unpredictable, debilitating, and if not managed properly, can increase the likelihood of a sickle cell crisis. With that said, one of the most important adjustments I have is a flexible approach to work. On days when my energy levels are lower, I can work from home. This enables me to manage my condition more effectively while still being productive. Something as simple as avoiding a stressful commute can make a huge difference in my available energy throughout the day.
When I do work in the office, I have access to a medical room. This provides a safe space if I need to rest, particularly if my medications cause drowsiness. It is a relatively small adjustment, but knowing that support is available gives me the confidence to attend the workplace.
Another key consideration for me is the weather. Cold temperatures are one of my major crisis triggers. During the winter months, I work full time from home to reduce that risk. I also tend to be less social during this period. While that can sometimes feel isolating, it’s an important way for me to avoid bugs and infections, which can also trigger a crisis. Looking after my health means making choices that may look different from those of my colleagues, but they help me remain well enough to continue working.
Safety is another area where adjustments matter. I have an emergency evacuation plan in place so that if my mobility is reduced on a particular day, there is a clear procedure to ensure I can leave the building safely in the event of an emergency. It’s something I hope I never need to use, but its existence provides reassurance and removes an unnecessary source of anxiety.
I’m also fortunate to have support when it comes to treatment. I undergo regular blood exchange transfusions, which are an essential part of managing my condition. The time I need for these appointments is paid and isn’t counted as sickness absence. That means that I’m not placed at a financial or professional disadvantage simply because I require ongoing medical treatment. It recognizes that managing a disability isn’t the same as being absent from work by choice.
Perhaps one of the most valuable things I’ve learned over the years is the importance of being open with my immediate team. While I understand that not everyone feels comfortable sharing details about their health, I’ve found that explaining the “why” behind my ways of working helps people understand my needs. It creates empathy, reduces misconceptions, and often makes colleagues more willing to offer support when needed.
It also means that if I become unwell unexpectedly, people aren’t caught completely off guard. They have a basic understanding of my condition and know how they can help.
Workplace adjustments aren’t about lowering expectations or gaining an advantage. They’re about removing barriers. When organizations get them right, disabled employees are given the opportunity to thrive, contribute their skills, and bring their whole selves to work.
For me, these adjustments don’t just make work possible; they make it sustainable. And it’s because of them that I’ve been able to build a long-standing and positive career.
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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