Talking about your baby's CF
Talking to friends and family about your child’s CF is something many parents find challenging. It can be hard to describe how you are feeling, the impact of your child’s diagnosis, and you may be faced with lots of questions from well-meaning family and friends.
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 them understand why the treatments and medicine are so important, why your baby needs extra care, and why you all as a family might need support as you adjust to the diagnosis.
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.
While talking about CF to family and friends may be helpful, there is no right or wrong way to talk to people about your baby’s CF. It’s up to you how much you say, and when. You can also direct friends and family to the Trust’s Helpline if they have questions that you don’t feel able to answer.
Trying to explain what CF actually is was tricky at first not knowing anything about it ourselves. We told our immediate circle first and news filtered round others. We never announced it on social media as such.
Don't shy away from the diagnosis now. Encourage people to ask questions and not to Google. Family and friends have been amazing in asking and learning about it from us – as we learn too.
- Sonja*, whose daughter Lily* has CF
We also publish lots of information resources and videos that may be useful to direct people to.
If your baby’s CF team includes a CF psychologist or social worker, speak to them if you’re finding it hard to talk about your baby’s CF, or if you just want some support about talking to others more generally. They are there to help you, and may be able to suggest ways of making it a little easier.
There are some occasions where it is important to let people know your baby has CF, for example if they start attending a childcare setting or school.
Top tips on talking about CF
-
Tell people how they can help
People around you will often want to help. This might feel overwhelming at times, so try and be clear about the best ways they can support you. This may be by talking about something other than CF, or there might be some practical things they can do to help you manage daily life with the condition.
-
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.
You could also talk things through with the CF psychologist or social worker. CF social workers can support the whole family and are happy to help plan these discussions, and hold tricky conversations with you if you would like them to. They can also speak to your loved ones separately, with your permission, if this would be helpful (they would not share any information about you or your child that you didn’t want them to).
-
Be ready for different reactions and questions
Some people might not have questions. Others might have lots of questions. And some of these questions might feel annoying or hurtful. It’s unlikely they mean to upset you by asking these questions; they might be trying to help. But 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.
-
Talking about genetics
Often when a baby with CF is diagnosed, the parents didn't know they were carriers of the CF gene, and the news comes as a shock to the whole family. Extended family members might have questions about what this means for them and may want to know whether they are likely to be carriers. These can be big questions to answer when you are dealing with a newborn and a diagnosis of CF.
It can be useful to know that anyone with a family member with CF or a family member who is a known carrier of the CF gene is able to access testing to find out if they are a carrier on the NHS, via their GP (some CF centres can also directly refer family members to genetic testing centres). We have information to help explain this so you don't have to.
Resources for new parents
We've created lots of information and support resources for parents who have recently found out their baby has CF.
Parents' top tips
Learn from those who've been there, done that, with these top tips from CF parents.
Looking after yourself
Taking care of yourself while caring for a baby with CF is super important.
Here to help
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.
Published July 2024
Next review date: July 2027