It took years for Kareem to be diagnosed, so we’ve been playing catch up with figuring out how to support him and his new needs in a short amount of time. As a sibling you’re in a unique position – one a friend, a cousin, a parent or partner cannot replace. I wanted to share some of the lessons I’ve learned and ideas from the accelerated experience we’ve had, as brother and sister, now with CF thrown in the mix.
1. Never assume there is anything that your sibling can’t do. This one is most important and is the point he repeated when I bothered him for help with this article. Unless they say, or seem to be really struggling with something, ask first if they need help. Otherwise, it can make them feel like they have another parent, rather than a sibling who’s their teammate they can tag in for a boost.
2. Their life is not all about CF – CF is not all of them. It is only a part. Don’t treat them as though they are a walking CFTR channel!
3. When they’re unwell or in hospital, use some time that would’ve normally been family time to make preparations for them. Do they want you to download some Netflix shows? Could you let them borrow your laptop or toiletries bag? You know all your sibling’s little quirks and their favourite pick-me-ups that the world doesn’t get to see. A favourite game? Favourite crisps they shove into sandwiches? A drawing from their room? In tougher times they might find it harder to reach out and explain the bigger challenges to their friends. Us siblings see the normal routine, and how it’s harder when they’re unwell. So step up.
4. Ask them for help too! Ask for their shoulder when you’re down, or worried about them. They’ll have some great advice, being warriors in their own right, and it means when they’re down they’ll be more confident you can be there for them too. But remember, just like you, sometimes they might want to be left alone!
5. Since they already need to sit and attack their meds several times a day, another seven reminders won’t help them feel your relationship is deeper than cystic fibrosis. Make it a habit to always ask about other important things in their life first, like a project, their friends or a hobby, before asking if they’re feeling well that day.
It can be really hard. Sometimes you feel guilty. Was it complete chance, the roll of a four-sided dice of alleles, the hand of divine intervention? However you see it, it feels unfair your sibling has to suffer and not you. But I’ve learned there’s no use in pondering over these huge unanswerable questions. So, I hide behind his door and throw a KitKat at him instead. (I advise you choose their chocolate of choice, and not to aim for the head like I ‘accidentally’ do!)
If you have an idea for the next Young Voices feature in CF Life magazine or would like to share your views, get in touch on Twitter @cftrustyouth or email email@example.com.