Telling people about CF

So I’m straight into another post about CF at university.
I wanted to do a post about how to tell people you have CF but when discussing this at a Youth Advisory Group (YAG) CF meeting it showed me that this answer is not so simple.
I was so scared about how to tell people I would be living with at uni that I have CF. At school it was never such an issue as I never really had my medication out around them and when I was super ill I would stay at home anyway. Living at uni meant that my flat mates would see everything and that was overwhelming for me.

At first I didn’t tell anyone I just went about life avoiding the subject. It wasn’t until one evening that my flat mate was in my room and I needed to do my evening nebs. I just went for it and I told her about my CF, she didn’t press me to tell her anymore which was a relief and she was so kind and caring about it. As for everyone else I never felt the time was right as I never wanted to bring the mood down during conversations. It wasn’t that I didn’t trust them. No one else knew for ages and I gradually told them as I went to appointments and when I inevitably got ill.

The reaction from everyone was so lovely, they all just made sure I knew they were there for me.

Although I had such a great reaction from them I have had bad reactions in the past.
A lot of the time people aren’t aware of what CF is, this means I have to explain it but as the illness is so complex and varies so much between suffers I never feel I’ve done it justice when explaining it to someone. It may be good to direct people to the CF trust website if they ask questions you don’t know how to answer.

Sadly people can be naive, a lot of people with CF get their illness compared to asthma which can be hard to hear. I am unsure of how to respond to this as I usually get quite upset and want to avoid speaking to that person. With confidence it would be good to educate them on the illness as they obviously just don’t understand what CF is.

Some people reel of facts they learnt from GCSE and A level biology about the illness (huge eyeroll). This can be hard so again it may be good to just explain that most people with CF have different symptoms and different treatments and they are all tailored to the preference of that person. What you learn in a textbook is just a generic fact and while it may be generally correct it’s not true for everyone.

On the whole people will be nice when you tell them. Sadly there isn’t one answer I can give on how to tell people and there is no way to predict reactions of people.
I know for me I get worried people may think I’m gross and especially when they hear me cough I’m worried they would want to avoid me but I’ve never actually had that response obviously.

The CF trust is holding sessions for children with CF and I have suggested that they help kids know how to tell people (such as uni or employers) about their CF and what to mention. I would recommend getting involved in these sessions.

I know this post doesn’t give an exact answer of how to tell people you have CF but I just wanted to give my experiences and give people confidence that reactions generally will be positive. If they aren’t it’s only due to a lack of knowledge.

If anyone with CF has any advice of this or any stories they want to share I will make sure to put them in a future blog post.

Before I end this post I just want to give a few personal updates.
Firstly I have my annual review on Monday and I’m so scared. This is a yearly appointment in which I meet with the whole CF team (Consultant, physio, dietician, social worker, psychologist and pharmacist) and I have a wide range of tests (diabetes test, x-ray, ultrasound, DEXA scan, blood test and an exercise test). This is to get a marker of where my health is currently and to compare to previous years.
My next post will be a day in the life post about my annual review.
I’ve also have a couple of swimming lessons now and I absolutely love it and have managed to swim without any assistance.
Finally, last week I started presenting one of the breakfast shows with a group of others at uni which is cool I will also talk about this more in another post soon.
That’s all for this week.

Thanks for reading,
Isabelle x

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