How Employers Fail People with Sickle Cell

Sickle cell disorder is a lifelong, genetic blood condition that causes chronic pain, fatigue, and unpredictable health crises. It is legally recognised as a disability under the UK Equality Act 2010. Yet in the workplace, this legal protection rarely translates into real, world support.

As advocate and author Jenica Leah puts it plainly: "Sickle cell isn’t recognised as a disability." Her words cut through the noise because while the law says one thing, people with sickle cell experience something entirely different.

There is no standardised protocol across companies for supporting employees with sickle cell. Every adjustment, from flexible hours to medical leave, often requires re-explaining, re-justifying, and sometimes even legal backing.

Workplace Discrimination

Despite being a protected condition under the Equality Act, many people living with sickle cell face discrimination that is subtle, but deeply harmful:

• Being viewed as unreliable due to frequent medical appointments or unplanned crises
• Struggling to secure or retain employment because of health-related absences
• Facing pressure to "power through" pain to meet deadlines or targets
• Being denied reasonable adjustments like hybrid working or temperature-controlled environments

 

This isn't just unfair, it's dangerous. Sickle cell crises can escalate quickly and require hospitalisation. Lack of understanding or support in the workplace can delay care and cause long-term harm.

A Culture Gap, Not Just a Policy Gap

Even in organisations with formal inclusion policies, sickle cell often remains invisible. It's not just about what's written in HR documents; it's about whether managers, colleagues, and leadership truly understand the lived experience.

When chronic illness is treated as an inconvenience rather than a legitimate need, employees are left to choose between their health and their livelihood. That is not what disability protection is supposed to look like.

What Needs to Change

• Employers must recognise sickle cell as a disability in both policy and practice
• HR departments need clearer guidelines for supporting chronic, invisible illnesses
• Workplace cultures should prioritise empathy, flexibility, and proactive inclusion
• Education on sickle cell must go beyond awareness days and become part of year-round DEI strategy

 

Sickle cell patients shouldn’t have to fight for recognition every time they clock in. Legal protection without lived understanding is just paper. It’s time workplaces bridge the gap.