Living With CF

Different with Cystic Fibrosis: The struggle of feeling ‘different’ from your peers at school and how to overcome this – Cerys Upstone

Everyone wants to blend in to an extent and be accepted. We all follow the status quo, and whilst we all reveal different personalities, there is a societal expectation to follow the same sort of path in life. In school especially, there is an inbuilt wariness of those who are ‘different’, and this can be hard to manage. When you’re born with a condition like CF, it can seem like you are different – especially when having to take time off to go to hospital, taking medicine, and spending more time trying to keep yourself healthy. It could mean you’re not able to socialise as often, have to cancel plans last minute and struggle keeping up with work. Even if you balance CF well, feeling different to others might still make things difficult. Living with CF is hard enough as it is, and you absolutely shouldn’t be made to feel like you don’t fit in because of it. From my own personal experience, as a 17-year-old with CF, I’ve thought of a few suggestions to make going through school with CF slightly easier.

Friends

My first suggestion is being open and honest with your friends. You might feel like you have to hide your CF in order to be ‘normal’, but from my experience, it’s far easier in the long run to share your CF with others from the offset. This doesn’t necessarily mean revealing everything about it the first time you meet someone (although if you want to that’s fine too!), but more gradually introducing the fact you have a medical condition. Maybe start with taking Creon in front of people, and have answers prepared for when people ask questions about it. It’s also important to realise that people asking questions isn’t a bad thing, and they’re normally doing it out of genuine curiosity and to understand what you go through – see it as a positive that they care! Answering simple questions like this can be a great way to introduce your CF to new people. That way, you’ve introduced the idea straight away, and then you can be in control of how much people know about your condition as the friendship progresses.

Who to tell you have CF

If you have reservations about lots of people knowing about CF, then you could just choose a couple of close friends to confide in. Whoever you decide to tell, it’s really important to have people on your side that know what you deal with and how to help you, so you have a really solid support network in place for when things get more difficult. Also, open up about the support you need from your friends. This could include sending missed work, or just moral support and someone on the end of the phone. If you have friends around you that understand, this can also make you feel less ‘different’, as you know they’ll be there for you, which starts to make other people’s opinions less relevant.

Another piece of advice is to make sure you’re surrounded by the right people. The people you spend your time with should be understanding and they shouldn’t make you feel excluded. If they don’t value you or you don’t feel listened to or supported with your CF, even if that’s just understanding/moral support, then something needs to change. If you think you’re not getting the respect you deserve, you could start by alerting your friends to that fact you feel that way and allow them time to change. Alternatively, or if you’ve already tried this, you should consider branching out and finding a different group to spend time with. That might seem almost unthinkable and scary, but it might be better in the long run. I went through this in school, when I was about 13. I felt very excluded in my friendship group, and I felt very different to them because of CF – I’d spent a lot of time in hospital that year, and I was on long-term steroids and therefore looked different too. I was told ‘there’s no point having fun with me, because I’m going to die soon anyway’. I decided to move friendship groups, and I’m so glad I did, as I’m still in the same group now. You shouldn’t feel like less of a person or friend just because you have a health condition, and you don’t have to!

Realising that being different is normal!

A more cognitive approach might help with the actual feeling of being different. By this, I mean changing your own attitude of what it means to be ‘different’, and how you feel about it. For example, think about how everyone has their own little quirks – no two people are the same. Everyone is different, and it’s this that makes life such a rich tapestry of different people. I’ve often heard people say ‘if everyone was the same, it would be boring’, and it’s this attitude that can really help. Although people with CF go through difficult challenges sometimes, you shouldn’t be made to feel ‘weird’ or embarrassed because of this!

Getting support without feeling ‘weird’

Being open about the level of support you want/need is also important. Everyone needs different levels of support at different times, so letting your school know the challenges you might face will help things run more smoothly. Because of the unpredictable nature of CF, you may require additional help at specific times, so it’s a great idea to set up an easy system to let the relevant people know (e.g. time off for hospital appointments, extra deadlines etc). If these mechanisms are set up from the start, it will be less of a big deal when these difficult times arise, meaning you’ll feel less awkward at the time. I was always reluctant to do this because I’m quite an independent person, and I didn’t want to be treated differently by teachers. However, if you tell the school that you might need support at certain times but want to be ‘normal’ for the rest of the time, they should respect this! This way you get the best of both worlds – support with missed work and extra deadlines when you’re not in school, but you don’t have to feel different to your peers day to day!

Although having CF and also going through regular challenges whilst going through school can be hard sometimes, following these tips should reduce the disparities between you and your peers, which should put you on a slightly more level playing field. Hopefully, it’ll make going through school slightly easier, and help you get the most out of your school-age years.

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