“We need to see and listen to everybody in the cystic fibrosis community”: Cydney’s story

As someone with cystic fibrosis, I sometimes am too sick to work; I may need to go to the hospital for appointments or treatment. Everyone in the CF community will understand this but in a previous job, I remember feeling that I was treated differently whenever I needed time off compared to my co-workers who were white.  

I once had to undergo surgery. I went into the hospital on a Friday and was back in work by Monday but no one asked how I was or if I was even well enough to go back to work. I was shocked by how little support I got from my employers (there’s a legal right for employers to give employees with cystic fibrosis time off and to make reasonable adjustments) and their cold response.  

My co-workers and boss just became less sympathetic and understanding but at the same time I felt that they were warmer towards colleagues who were white whenever they needed time off for health reasons. Sometimes I felt they thought ‘oh she’s ill again’. 

People still don’t understand how hard it is to live with cystic fibrosis and to me, this showed that there’s this perception that people of colour might be ‘faking it’. This is what it’s like to live with cystic fibrosis when you are a person of colour. Your health is not taken seriously and pleas for help questioned; I felt like I was being gaslighted. 

Another time in my old job, I remember being sick but not being allowed to go home. At the same time, my white co-workers who were sick were supported and allowed to rest at home. I think about this a lot; why didn’t they believe me? And this despite having CF – a chronic life-limiting illness which makes it so difficult to breathe, which means I can take up to 30 pills every day. This means I have to wash my hands and be super clean all of the time, so that I don’t pick up any infections which could be really dangerous for someone with cystic fibrosis. I think it shows there’s a subtle racial bias in the workplace and that people of colour with health conditions like cystic fibrosis can be treated differently. 

This is why it’s so important to represent people of colour with CF. We exist! It’s that simple; anyone can be born with CF. Disproportionally more people who are white are born with CF but that doesn’t mean we don’t deserve representation too.  

We need to see and to listen to everybody in the cystic fibrosis community.  

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. 

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