Talking to my employer about CF

I have been fortunate to work full-time in IT for over 20 years, starting just after I received my late CF diagnosis in 2001, at the age of 23. In that time, I’ve had varied experiences of talking to employers about how CF affects me in the workplace.

Symptoms can manifest differently across the CF population, and not all appear at the same time. Throughout my career, my lungs and digestive system have affected my ability to work, particularly in an office environment. It’s been an incredibly emotional journey over the years, having to communicate with different employers about CF, but I feel incredibly lucky to have found my current employment with Dell Technologies.

In the early years of my career, my symptoms were relatively mild and so I was able to work full-time in an office. My manager at the time knew I had CF and I was able to attend my hospital appointments and do my nebuliser treatments onsite. However, things changed in 2008 when I had my first hospital admission with reduced lung function and pancreatitis. My whole lifestyle changed after I was diagnosed with CF-related diabetes (CFRD), and it became physically challenging to go into the office.

I felt like I was walking on eggshells

I found it very difficult to approach my managers about my change in circumstances, the change in CF treatments, and my need to work from home. It was very much against the company’s culture as they didn’t have a remote working policy. I felt like I was walking on eggshells around them, and I frequently found myself having to choose between my health and work. I was nervous about approaching them whenever I needed time off for treatment. The employer organised an independent medical assessment by someone who knew nothing about CF. This was very stressful because I was fearful of losing my job. In the end I was allowed to work from home for the next few years, but I always felt like a hindrance since I could not be in the office, and no one gave me the opportunity to explain how CF was affecting me.

Unfortunately, that organisation went into administration, and I was unemployed for five months, which was one of the darkest periods of my life. Despite me applying for roles identical to my previous one and clearly having the appropriate skills, I was greeted with the same roadblock of not being compatible with organisations’ “culture” when I told them about my CF. Ultimately, following advice from DWP that legally I didn’t have to disclose my health, I found a role with Dell Technologies, and my future looked so much brighter.

Compassionate management makes all the difference

At Dell Technologies, I have been incredibly fortunate to have had managers who are human. I know that sounds silly to say, but they put people first, which continues to be a breath of fresh air. I enjoy an open-door policy with them and have been able to approach them without fear. No one knew about CF when I joined, and I deliberately adopted a policy of being transparent with HR and my managers. By giving them the opportunity to learn about CF and how it affects me in the workplace, they have been able to make reasonable adjustments, enabling me to be compliant with my CF medication regime and also continue working. Not having the headache and worry about asking for time off to go to hospital for appointments or admissions is profound and is something I am incredibly grateful to Dell Technologies for giving me.

It is important to recognise that many will not find it easy to talk to their employer about CF. However, I would advise that you should give them the opportunity to listen and discuss what options they can offer to help you work safely. Be as open as possible and keep lines of communication clear. Keep your manager in the loop and provide as much notice as possible if you have hospital appointments or admissions, so that they can make reasonable adjustments on their side to ensure business continuity. View your relationship with your employer as a partnership.

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. 

The law gives people with CF protection against discrimination at every stage of the employment process. Find out more by reading our employment factsheet.

If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to. 

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