How to manage teenage years with Cystic Fibrosis – Cerys Upstone
Teenage years – ‘The best years of your life!’ they say. Finding independence, taking on new responsibilities, making friends, partying, studying. Teens are desperate to blend in, with huge peer pressure. There’s a lot to balance at the best of times, but learning to navigate this unfamiliar path when also dealing with a chronic condition like Cystic Fibrosis can be very challenging. However, this advice should give you some ideas to help balance CF and adolescence and reassure you that teenage years with CF can be just as enjoyable as without.
Making new friends and enjoying time with them is a common aspect of being a teenager. As you get older, you might start getting invited out more regularly, and you’ll start managing this yourself instead of it going through your parents/carers. That’s really exciting, but it’s important to take care of yourself when going out with friends. Remembering Creon is an obvious one – even if normally you’re really good at that, you might get distracted and forget. To combat this, you could tell your friends to remind you – from my experience, they like feeling involved! Or you could set reminders on your phone and regular intervals just in case, to make sure you don’t have to go through the pain of forgetting them (and we all know how painful that can be!).
If you go out for the night/for a sleepover, it can ruin your routine and being away from home can make treatments harder to manage. This absolutely should not put you off though and going away for the night can be a great way of gaining more independence and give you confidence that you have the ability to look after yourself. A good way of managing medicines is to pre-prepare them in little pots to take with you so you don’t have to bring a big box full of lots of different bottles/packets. I always separate mine out into a morning pot labelled AM and an evening pot labelled PM. That way, it’s easy to know which ones to take when, and can be taken quickly without ruining your fun. Also, being prepared with nebulisers/physio is also helpful. For example, if you’re going to a friend’s house from 5pm to 10am the next day, you could do your evening treatment before you even go to their house and do your morning treatment when you get back home. That way you don’t even have to worry about it whilst you’re out.
Getting to know your body is important to make sure you look after yourself. After a lot of socialising, it’s important to give your body time to rest. It can only handle so much, and the consequences of being ‘burnt out’ can be even worse when you have CF. This shouldn’t mean not having fun, but instead understanding your limits and keeping an eye out for signs of illness and therefore slowing down a bit can prevent you from becoming seriously ill. If you just take one day to rest, it could prevent a whole week of having to stop socialising just to recover.
Another key part of teenage life is education. For the early teenage years, you’ll still be in secondary/high school, and after that, different forms of higher education are available that many people choose to do. Having the time to study for whatever part of education you’re in can be hard, and the older you get, the harder it gets too. That’s not easy with CF, where challenges often increase the older you get, especially as you take more control over your health and gain more independence. Balancing studying and healthcare is hard, and I doubt anyone can claim to have done it perfectly – I definitely haven’t! One thing that does help is having a good routine, so you know where to fit in study and health to make sure it all gets completed. Another thing is scheduling – if you know you’ll be missing school in advance, because of a hospital appointment, ask your teachers for the work in advance so you can squeeze it in wherever you have spare time to make sure you don’t fall behind. Also, scheduling enough time to do homework in advance when you’re feeling well can ensure you don’t end up with piles of outstanding work in case you fall ill. Being that extra bit prepared can really help combat the unpredictable nature of CF.
One of the hardest times to stay on top of school work can be during/after a hospital admission. It’s almost impossible to keep completely on top of missed work whilst in hospital. You might manage a tiny bit, but only that’s if you feel up to it and can even concentrate over the constant noise and lack of sleep (if you can concentrate then please teach me how!). One way to help with this is to let your teachers know at the start of the year that you may have some time off as a warning, so they can be prepared to help when required. They will be able to send over anything you’ve missed, and you could ask them for one-to-one support to help you catch up when you return. You can also ask friends for notes and ask for extensions on assignments. One thing I would say is to not let the anxiety about how behind you are stop you from returning to school as soon as you would have. That might be easier said than done, but from my experience, it’s a lot simpler to catch up when you go back to school, because although you’ll have new class work to do as well, lots of things will click into place from lessons, and teachers will be able to explain things in person.
It’s totally possible to get a good education despite having CF! Lots of people with CF achieve great grades and go on to university/college. You might need extra support at times, but that’s normal, and whilst you might have to put more effort in than your peers who don’t have CF, it’ll be worth it in the end!
Gaining independence – in general and with health
As you progress into your teenage years, you’ll start to pick up responsibility for lots of things your parents/carers may have done for you before. This is the case for every teenager. Whilst balancing CF care on top of this, it’s a good idea to pick up new responsibilities gradually, rather than all in one go. This will help you get used to everything slowly and manage your treatments on top of this.
In terms of gaining independence over your CF care, this is also best when done gradually. Start by doing something simple, like taking your own Creon out with you to get into the habit (but make sure someone always carries around a spare just in case you forget – I learnt this the hard way!). Then you could try setting up nebulisers by yourself, learning your medication regime and managing your own treatments. For managing medicines and treatments, I found it really useful to have a checklist of the different types and when to take them, that I could tick off. As you start doing that by yourself more and more, you’ll start to remember, and eventually you won’t need the chart anymore. Also, getting in a good routine of when to do treatments can make it easier to remember them. If you do them at a similar time each day, it can become just like remembering to brush your teeth.
Gaining independence can be fun and exciting, but it can also bring a load of worries about how you might manage on your own. The main thing to remember is that just because you’re getting older doesn’t mean you’re suddenly on your own! The great thing about progressing through your teenage years is that you have a transitional stage that happens gradually, and even when you become an adult, you don’t have to shoulder everything on your own. It’s not like a light switch that turns on every bit of responsibility as soon as you turn 18 (at least I hope not!). Your family and friends’ support will always remain crucial, and there’s not a single person that manages life completely on their own. It’s completely normal (and often encouraged!) to ask for help when you need it, especially when CF is being a pain and you’re not feeling yourself. You can’t deny that teenage years come with lots of struggles, from trying to fit in at school to becoming more independent. When paired with CF it can’t often feel really difficult. But from someone who has experienced many of these challenges first-hand, it’s all worth it, and you shouldn’t let Cystic Fibrosis get in the way of enjoying your adolescence overall.