We know that seeing CF portrayed on screen (such as in ‘Five Feet Apart’) or in books can be confronting - it can bring up questions, worries or concerns that people affected by CF, particularly young people, might not have thought about before. If you are a parent, you might find your child asking questions that you find hard to answer or becoming aware of aspects of CF that you haven't discussed with them before.
Every individual and family are different in the way they talk about difficult or sensitive issues, but being able to share worries or ask questions with people you love and trust can be really helpful. We have prepared this guide to support you in these conversations. Your CF team will also be able to support you and your family with any concerns.
It can help to ask open questions to start a conversation...
- “How does what you've seen or read compare to your experience of life with cystic fibrosis?”
- “What questions do you have about what you’ve seen? What parts of the film stuck with you? What questions did it bring up for you?”
- “Did you find out anything new about CF? How do you feel about that?”
- “Have you spoken to your friends about the film? What did they think about it? What questions do you think your friends might have about cystic fibrosis if they saw this?”
- “Is there anything you want to talk to your CF team about at your next appointment? How can I help you raise that with them?”
- “How CF specialists deal with cross-infection is very different in the United States – how do you think life for people with CF in the United States might be different from your own?”
Sometimes it can help to talk about ways you might feel, to encourage someone else to share their thoughts.
- "Some people might find that a bit worrying... How do you feel about it?"
- "That made me feel a bit uncomfortable - how are you feeling about it?"
- “I felt that […] was portrayed really well – which bits did you enjoy?”
- “I found how they dealt with […] really surprising – did anything catch you off-guard?”
Different topics and themes affect everyone in different ways, and it can be surprising what strikes a particular chord with different people, so you may find that what upsets you might not affect someone else, and that’s OK – the important thing for everyone is to have the space and support to talk about it.
It can be important to put what has been seen or read into context, so you could think about talking through some of these points.
Everyone with CF is different, in terms of their health itself but also how they handle the challenges it can bring and how they feel about the condition.
TV, books and in some cases, what we see online, is usually dramatised and 'creative licence' is used to make facts fit the story. Sometimes we need to talk it through to work out what is reality and what is drama, and how that makes us feel.
We may see different views and perspectives of CF within just one film, book, video etc. It can be useful to talk about which of these someone does/doesn’t identify with, and the fact that each one is a specific character created for the purpose of a story – in real life we are all a mixture of different views, and these can change over time as we grow, age and have different life experiences.
Further information and support
If you have any worries, concerns or questions about CF or your health, please speak to your CF team.
The Cystic Fibrosis Trust’s Helpline provides information, support and a listening ear to anyone affected by cystic fibrosis. Call 0300 373 1000 or email email@example.com and take a look at our opening hours here.
Our forum is a space for people with CF and their friends, families and carers to talk about the issues that matter to them with other people in the CF community. You will need to register on our website to use the forum.
Information and support
Find out more about the information and support available for people with CF on our website, including financial support, information resources, information on travelling abroad and how you can connect with others with cystic fibrosis.
We have worked with people with CF, their families, and CF and transplant clinicians to create three booklets on transplant. Read them here.
Support for young people
The Cystic Fibrosis Trust’s dedicated youth programme supports young people with CF aged 10-25.
Young Minds: information and support on young people’s mental health
The Mix: information and support on a wide range of topics for under 25s
Death, dying and bereavement
We have support and information to help you plan for end of life if you have cystic fibrosis, and to support you through the bereavement process if you have lost someone to the condition.
These resources also signpost to other organisations who can help to support you with death, dying and bereavement.
Help if you are struggling
If you are struggling with the issues raised in ‘Five Feet Apart’ or another portrayal of CF, and what you have seen or heard has made you feel unable to cope, you can contact the Samaritans at any time, from any phone, on 116 123.