By Isobel Crossley (she/her)
When Ally, Beth and Ross first asked me if I’d like to write a post, I was originally hesitant as I didn’t think I really had a place to say anything due to not suffering from a long term health condition myself, but I do have a sister with a chronic illness and a few good friends too, so I thought I’d try talk about my experience as a sibling. My sister Ella was diagnosed with Crohn’s Disease in 2016, which was unsurprising due to the fact that both my Mum and Grandad both suffer with the illness, but it was still a hard adjustment for my whole family. I can’t speak for any of my family members, but I remember feeling a bit helpless knowing there was nothing I could do to take this disease away from Ella which she would now have to deal with for the rest of her life, along with feeling guilty that she was the one that got it and not me. In the just under 4 years since Ella’s diagnosis I have learnt a few ways to feel slightly less helpless and (have hopefully) come up with a few ways to help Ella when she’s struggling so I thought I’d share them for anyone who has recently had a sibling or close friend diagnosed with a chronic illness.
When someone you love has been diagnosed with a long-term health condition is to be as patient and as understanding as possible. They are probably feeling a mixture of emotions, from being scared to fearing the unknown and from my experience I think the best way to support someone is to let them know you understand as much as you can without experiencing it yourself and to be patient and allow them to process it in their own times and on their own terms.
Number 2. Try and be as positive as possible. In my family we try to see the light side of things and often make jokes and laugh about things whenever we can (probably as a coping mechanism!!) which helps makes things easier. I remember we were in London when Ella had a feeding tube and it wasn’t working so we were trying to change it on a bin outside Harrods during Christmas with what felt like the whole world walking past us with the machine beeping and beeping at us until we just started laughing at the whole situation and how annoying it was, definitely a laugh or you’ll cry moment!! Another that comes to mind was just after Ella’s diagnosis when my Dad fainted at the scans and we accused him of stealing her thunder.
Number 3. Follow their lead. Dealing with a chronic illness can sometimes mean everyday tasks are dealt with differently but can still 100% be done. Whilst it can be hard to resist the urge to help, trust that your loved one knows their limits and just make sure they know you’re there for them if they want or need your help. However, saying this me and Ella have developed some kind of system where I know she’s not okay, she knows she’s not okay but will still proceed to tell me she’s fine, so in times like that I’d advise just being a bit more cautious of their needs but not pushy as they know when they need a break.
Number 4. This one isn’t as much how to help your sibling or loved one but that it’s okay its hard on you too. Obviously being a sibling of someone with a long-term health condition isn’t half as hard as the one who has the one who has the suffer the illness, however it’s okay to admit that it can be hard on you too. Watching someone you love go through something like this isn’t fun and is upsetting and can be stressful and worrying at times. Therefore, even if you’re not directly suffering it’s more than okay to admit if you’re having a hard time coping with it all.
Despite not feeling qualified enough to talk about this, I hope this can help someone supporting someone else suffering with a chronic illness or long-term health condition. The most important things to remember are to be as patient and empathetic as you can, and if they get annoyed at you because you ask them if they’re okay about 100 times a day, it’s only because you love them.
(Originally published 16/1/20)