Talking Toolkit: Tips to help you kickstart conversations about CF

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Talking Toolkit: Tips to help you kickstart conversations about CF

Check out our Talking Toolkit with tips, blogs and resources to help you start conversations about your CF, and help people around you understand. 

We know that talking about cystic fibrosis and how it impacts your everyday life can be tough. Whether you’re opening up to a friend, explaining CF to a family member, or describing your experiences to your work colleagues, finding the right words isn’t always easy. As part of our CFTruths campaign, we’ve created a Talking Toolkit with some tips, blogs and resources to help you start conversations about your CF, and help people around you understand. 

Why talking about your CF could help

Not everybody will feel comfortable, or ready, to talk about CF – and that’s totally okay. You might be worried that you’ll be judged or be seen differently by those around you. Or perhaps you feel like you would rather deal with it in your own way. You should never feel pressured to open up if you don’t want to. We’re all different, and it’s important to do whatever feels right for you at the time.  

Often talking openly about CF can be helpful. It’s a chance to give those around you an insight into life with the condition; to help people understand why sometimes you might have to cancel plans at the last minute, why you have to be extra careful in crowded places, or do lots of different treatments. These conversations might also help friends and family feel better equipped to offer their support – or to take a step back if that’s what you need.  

Living with a long-term condition like CF can feel isolating but keeping everything bottled up inside is rarely a good thing. Sharing the burden could help you feel less alone. It can take that extra weight off your shoulders and people often say it’s a relief to get things out in the open. You might even find it empowering to raise awareness of CF with those around you.  

Talking can also be a chance to connect with others in the CF community. Chatting through experiences with someone who ‘gets’ what you’re going through can give you a different perspective on things and could be a chance to pick up useful tips for dealing with the everyday challenges that CF can bring, from someone who understands.  

Tips for talking about CF 

Be prepared 

Talking about CF might make you feel anxious, especially if it’s the first time you’re telling someone about it. You might find it helpful to jot down some notes on what you want to say beforehand and think about what information you’re happy to share. This will help you feel in control of the conversation.  

Misconceptions about CF 

Some people might have misconceptions about CF, influenced by something they’ve seen on TV, or read in a newspaper – so it’s always best to be ready for this. The news about Kaftrio, for example, could lead to people talking to you about a ‘ miracle cure’. However well-meaning their comments, this can be hard, especially if you don’t benefit from the drug. Be honest about how this affects you and signpost them to the Trust’s website for up-to-date and accurate information on the latest CF treatments.  

Tell people how they can help and support you 

People around you will want to help. This might feel overwhelming at times, so try and be clear about the best ways they can support you. Whether that’s simply by ignoring it and talking about anything other than CF, or if there’s some practical things they can do to help you manage daily life with the condition.  

Have resources ready you can signpost to 

If you can’t quite find the right words, we have lots of resources you can share with friends, family members, teachers and employers to help them get to grips with cystic fibrosis. But it’s always good to remind them that CF is different for everybody, so if they have a specific question about how the condition impacts your daily life, you are the best port of call to ask!  

Be ready for different reactions and questions 

Some people might  have questions. Others might have A LOT of questions. And some of these questions might feel annoying or hurtful. This is rarely the intention, and often the curiosity will come from a good place. Don’t be afraid to (politely) decline to answer a question, and be honest if you aren’t comfortable with the direction the conversation is going.  

Starting conversations with your employer 

Talking to your employer about CF might feel particularly daunting, but try not to worry! The appropriate stage for an employer to ask health questions will often be after a job offer is made, but before you start employment. Be open and honest with your line manager about how CF may affect your work. We have information specifically for employers outlining the basics of CF and how it can affect people with the condition. In this blog, Shad, who has CF, shares his tips for talking to your employer about CF. 

"Have a think about who you are talking to: why do you want to talk to them about your CF and what do you want them to know? It is also important to think about how much you are comfortable with sharing beforehand, and remember that you don’t have to answer any questions that you don’t want to. Most importantly, do not worry. I’ve found that almost everyone will be curious, sympathetic and understanding, and anyone who judges or dismisses you for your condition is not worth your company"

Caitlin, who has CF, shares her top tip for talking about cystic fibrosis

You may find some of our blogs and resources helpful when talking about CF

Tips to start a conversation about mental health

Sometimes starting conversations about how we’re feeling can seem daunting. Here are some simple tips to help you talk about mental health. 

Six annoying things about living with an invisible condition

Our Youth Advisory Group have put together a blog about their experience of living with an invisible condition like CF.

Five things I wish you knew about CF: A parent’s perspective

Lian is mum to Henry, 6, who has cystic fibrosis (CF). As part of our #CFTruths campaign, here she shares some of the things she wishes more people knew about CF.

What is cystic fibrosis, exactly?

A video to share with anybody who wants to learn more about CF. 

Friends and family guide

A flyer to share with friends and family to help them better understand cystic fibrosis and your child's diagnosis.

Factsheet for teachers

Our information for teachers who have a student with CF in their class. 

A factsheet on work and CF

Take a look at our factsheet on employment, including information to share with your employer about CF. 

Information for training providers, colleges and universities

A factsheet for training providers, colleges and universities about CF. 

Discussion guide

You may find yourself having discussions about CF when it is being featured in films, TV series or books. We have put together some questions to help you with these conversations. 

 

Spread the word

If you want to spread the word and help raise awareness of CF, we have created some social media graphics. Download and share through your own channels – and don’t forget to use the #CFTruths and tag us on social media @cftrust.

Helpline

If you, or your friends and family, have any questions about CF, our Helpline team are here to help. They can provide a listening ear, practical advice or direct you to other sources of information and support. The Helpline can be contacted by calling 0300 373 1000 or emailing helpline@cysticfibrosis.org.uk and is open Monday to Friday from 9am-5pm

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