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Siblings and CF - growing up in the shadow of cystic fibrosis

Researchers at UCL, funded by the Cystic Fibrosis Trust, are studying how cystic fibrosis (CF) affects all aspects of life, and they are currently particularly interested in hearing from siblings of people with CF, as well as people living with the condition and other family members. In this article reprinted from the first issue of CF Life in 2016, Imogen, now 22, wrote about her relationship with her brother Dan.

Cystic fibrosis doesn’t affect only those born with the condition. Parents, siblings, family, friends… they all learn to live with CF, they’re all fighting for a life unlimited by CF as well. 20-year-old Imogen got in touch and asked to share her experiences of growing up in the shadow of cystic fibrosis, and how she and her brother share a bond that won’t break.

Imogen and Dan as children

"As a child, I did everything I could to avoid cystic fibrosis. If it was being discussed I’d leave the room, if it was written somewhere I’d cover it up so I didn’t have to see it. Cystic fibrosis was the invisible and unpronounceable ‘thing’ that made my brother poorly, and I wanted no part of it. 

"As I got older I came to understand CF more, but that never made it easier. I was, and am, fortunate that Daniel and I have always been close: we share a sense of humour and an approach to life that unites us. However, I always struggled with the presence of an illness which could, apparently at whim, both hospitalise him and leave me feeling alone and frightened. I felt invisible when family friends greeted me by asking after my brother. I didn’t feel able to be angry that CF was in my life as well as his and that, put simply, sometimes it sucked. So whenever chest infections or awful bugs arrived, I’d bury my head in the proverbial sand and pretend it didn’t exist until the brother I recognised was returned to me by a wonderful team of doctors and nurses. 

Imogen and Dan in 2016"Now 20, I am finally getting to grips with CF’s presence in our lives. Yes, it is still hard when he is particularly unwell. But CF isn’t going anywhere, so we may as well have a laugh along the way. My brother is the most resilient, witty, and determined person I know, and I love him for it. Our mum always said how lucky Daniel and I were to have each other, and our dad says if you can face a hard situation with humour, then you’ve won. So together – me and my brother versus cystic fibrosis? I’d say we’re winning."  

Help with this research

The study at UCL is designed to help researchers learn more about what life is like for people with CF and their families, part of a wider project exploring the interaction between mental health and physical health. The team is looking for people with CF age 11 years and over, as well as siblings and parents, to talk about how CF can affect areas such as school or work, family life and mental health, among others.

If you want to get involved, or have any questions, contact the team at ICH.CFstudy@ucl.ac.uk, or phone 07756 339965. If you take part you will receive a £10 Amazon voucher for your time, and travel expenses if you choose to do it in person.