When you were younger, your parents decided whether to tell people about you having CF or not. They would have decided whether to tell your family members, your teachers, your friend’s parents or your sport’s coach. Some of these people do need to know so they understand your specific needs, such as if you need to go to the toilet quickly, why you are eating lots of fatty foods or why you might have been in hospital for a couple of weeks.
As you get older you will be able to decide more and more who you want to tell about having CF. For some people it is a very private thing and other people are really open about it. There is no right or wrong way. It can be hard to work out what you want to do though. There may be positive and negative things about both options.
Below are some things to consider when you’re trying to work out whether or not you will tell others you have CF.
What have you and your parents done in the past?
- Have your parents usually been open or private about your CF?
- What do you like about how your parents have handled things?
- What don’t you like about how your parents have handled things?
- Have you usually been quite open or private about your CF?
- Are you happy to keep handling things the same way or would you like a change?
What might happen if you don’t tell?
- People won’t know you have CF unless you tell them. Your CF can remain private.
- You won’t have to answer any questions about what it’s like to have CF. Sometimes people ask questions about having CF that might make you uncomfortable or ask you at an embarrassing time. If people don’t know you have CF this won’t happen.
- People won’t treat you any differently to anyone else if they don’t know you have CF.
- If people don’t know you have CF they might ask you questions about why you cough or why you need to have medication at school. It can be hard to answer this question if you don’t want someone to know you have CF.
- You might not feel like you’re being totally honest with yourself or other people if you don’t tell them.
What might happen if you do tell others?
- You might feel like you are being totally honest with yourself and others. If other know about your CF and you need extra support, you are more likely to get the help and understanding you need.
- Sometimes it’s easier to be open. You don’t have to make up a reason for your cough and medication for example. People will know you cough and need medication because of your CF and they will probably forget about it soon enough.
- If you tell people about your CF you can ask them to treat you in ways that are helpful for you. For example, you can say “Because of my CF I cough more than other people but this is normal for me so don’t worry” or “Because of my CF I sometimes have time off from school. Can you please take notes for me if I’m away?”
- If you tell people about your CF you will be able to tell them exactly how it affects you so they don’t have to guess, or find information on the internet which doesn’t apply to you.
- Some people may treat you differently to other people who don’t have CF and you might not want to be treated differently.
Once you reach high school, or upper primary, being able to speak to your teachers about having CF and your needs, will be a really useful skill to develop. If teachers are aware, they can learn more about how CF affects you as an individual and how they can help you do your best at school and enjoy your time there.
It might be a bit daunting, but here are some tips:
If you aren’t quite sure what to say here are few things you can try:
- Think of 2 or 3 ways that CF affects you, that you can easily explain. For example, having lots of chest infections, needing to do treatment and taking medication every day or needing enzymes to digest your food. Write them down.
- Practice explaining CF to your brother or sister or your best friend.
- Ask your parents how they explain what CF is to others.
- Ask your doctor to explain CF to you in a way that you and your friends can understand.
- If you have an older sibling or a friend with CF ask them how they explain it to others.
- have a look on YouTube for ideas: there are a few young people with CF on there who talk about their experiences.
- It you enjoy public speaking, then it might be worth asking your teacher if you could present some information to the class about CF and what it is like to have it.
- Some people with CF have had a Q&A session with their classmates where the students were able to ask questions they had.
- Read our Tips and Ideas for High School Students with CF booklet.
The CF Smart program, has lots of general information available for students, teachers and parents teachers.