Sickle cell and inclusion in the workplace: A personal story

2 months ago 38

Last week, I wrote about Sickle cell and the workplace. Sometimes I am sent stories from around the world, from those living with SCD, who wish to share their personal experiences.  This is a follow-up from last week’s write-up, and it is by Atinuke Jose.

The fluorescent lights used to blur into a comforting white noise whenever I sat at my desk working. But each flicker felt cold, mirroring the discontent in my supervisor’s eyes. Sickle cell disease, a constant companion I never asked for, has become a weapon used against me. Explaining the sudden, excruciating pain of a crisis was once met with empathy; now, it’s met with a dismissive wave and a muttered comment about “another absence.” My detailed medical records, proof of my condition, are unrecognised in a performance review environment that suddenly regards my work as below par due to these uncontrollable flare-ups, thanks to Sickle cell.

The irony is a bitter pill to swallow.  Here I am, a seasoned veteran person, who has poured her heart into this company; pushing through fatigue just to meet deadlines. Yet, my illness is twisted into a narrative of unreliability. The isolation caused by whispers and judgmental glances cuts deep. Colleagues, once friendly, now seem wary.

But amidst the frustration, a fire ignites within. This isn’t just my story; it is the story of countless others living with SCD, who face similar prejudice in the workplace. We are more than our illnesses.  We are dedicated, skilled individuals.  This isn’t a search for sympathy; it’s a fight for equity and fairness. Many years of proven ability shouldn’t be negated by a chronic condition. For those not in the know, SCD is a critical, chronic illness that can significantly impact a person’s life, including their work, amongst other issues.

Unfortunately, many employees living with SCD face misunderstandings and prejudice due to their health. This often leads to a perception of poor performance, even when the employee is dedicated and competent. Here’s what most people should know; after all.

One in four Nigerians carry the Sickle cell trait. The severity of SCD varies from person to person. While some experience occasional flare-ups, others face more frequent and debilitating episodes. SCD flare-ups can come on suddenly, requiring employees to miss work unexpectedly. The pain is excruciating and involves lots of trauma to the body and the mind.

Sometimes, some employees with SCD come to work despite how they are feeling. With too many missed days they cannot afford to get better at home, despite how much they need the rest. Isolation and ostracism within the workplace can further impact morale and one’s mental health, further exacerbating stress, and leading to an SC crisis. Even between episodes, SCD can cause chronic fatigue, impacting an employee’s energy levels. You may have noticed days in which an employee living with SCD is active and another day, they were quiet, forgetful, and making simple mistakes.

Chronic pain management often involves medication and, in severe cash hospitalisation. This ripple effect disrupts every aspect of a person’s life, from family life to finances, to their work and overall well-being.  There is also the toll that it takes on the body to manage all these various aspects of Sickle cell artist’s effects.

People with SCD deserve a workplace that respects our health limitations while valuing our contributions. It’s time to break the cycle of prejudice. We seek opportunities where compassion replaces doubt, and reasonable accommodations allow us to thrive in the workplace. According to Muyiwa B., a SCD warrior who was dismissed unfairly, “I see a future where people with SCD are seen beyond

the lens of health prejudices equaled as other humans for their resilience, productivity, and impact.”

Nigeria, home to the world’s largest sickle cell population, deserves a workforce that recognizes our capability and resilience. It is time for employers to shed outdated perceptions and embrace the immense value those living with SCD bring to the workplace. Sickle cell disease is also interspersed by sudden complications such as bone pain crisis, and accelerated destruction of red blood cell crisis). “These complications vary greatly between and within affected individuals and pose significant negative effects on the quality of life, financial and psychosocial health. It is only mindful for managers of human resources to be sensitive to these peculiarities, as well as promote equity in the workplace,” stated Dr Ademola Adewoyin, Consultant Haematologist.

Discussions about fair employment practices often overlook the challenges faced by employees with invisible illnesses like Sickle Cell Disease (SCD). Managers may not understand the emotional toll of absenteeism for someone with SCD.  The constant fear of a flare-up and the associated stigma of calling in sick cacandyanvy bura den for an individual living with SCD to carry.

This lack of understanding can also aggravate the condition. As Phil Idokogi, a Certified Life Coach and Clinical Counsellor, pointed out, “I firmly believe that the lack of psychosocial support and empathy for these employees is what causes or leads to the frequency of their crisis. Imagine constantly being afraid that you are not going to meet a deadline, or that you are going to let your team and manager down because you know that your body, through no fault of yours will fail you at some point, just imagine that. We do not talk enough about this condition that is prevalent in our clime. We do not talk enough about how we can create a workplace that supports people living with SCD aextendsend to them the accolades they deserve. Believe me, they deserve all our accolades for their acts of bravery!”

Until next time.

If you would like to get in touch with me about Sickle cell, do so, via my email address; [email protected].  ACheckoutmy blog:     https://www.dailylivingwithsicklecell.com/    My book on Sickle Cell – HOW TO LIVE WITH SICKLE CELL and my other books are available for purchase on www.amazon

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