Advice needed from anyone with CF and/or diabetes DC, and/or teens with chronic illness

[phlossie]

My SIL is 14yo, she has CF and is showing early signs of diabetes, but refuses to be tested for it. For a start, she's needle-phobic, but I think mainly she just fed up with the whole thing, and doesn't want something else to deal with.

She's also got braces and glasses (I had both, and remember those things alone being miserable), and is at that age where anything the makes her different from her peers is difficult. And where she's had a lot of time off school because of CF-related stuff and other stuff including chicken pox and Swine flu in the last couple of months, she struggles to maintain friendships at school.

It's all a bit shit for her - and for her mum. I spoke to my MIL today, who really wants me to talk to her and hopefully talk her in to having the diabetes test. I desperately want to help - I'd really like to wave a magic wand and make it go away - but if I could make any difference to either my MIL and SIL... But what do I say? Anyone got any wise words?

It is indeed a bit shit for her but you can't fix that and you can't make her come to terms with her condition - so take that pressure off yourself right now!

You can help though - in lots of ways.

Don't treat her like a sick 14 yr old, treat her like a 14 yr old - so if she's being a brat tell her that - then take her out for a coffee or whatever. (I realise the diabetes makes this hard)

The needle phobia - she should have some contacts with a nursing team that can support her. Does she get the emla cream to use beforehand? It is very useful (I work in a renal unit - we get through a lot of it!)

If she's 14 she will be starting the transition to adult services soon and a new group of people to talk to may actually be a positive thing for her especially as they are going to treat her like the adult she is becoming. It's hard for people to do that when they've known you all your life and you've been sick all your life.

Friends - could you support her in getting in touch with one or two people and arranging to meet up - maybe to go to the cinema?

Bottom line though is - she can have the test, deal with what's happening or not happening and take care of her health. That's the adult thing to do and that's not something anybody else is going to fo her. She is in control and she can really impress everybody by taking that on.Or she can not step up to that, stick her head in the sand, harm her health and her future.

I think more than anything she wants to be in charge of her own life and her illness is doing everything it can to stop that. She needs to take back that power and you just need to tell her you will all empower her as much as you can but she's the one who's calling the shots.

I think connecting with other teens with CF would be important, as it would give a vent for some of the problems she is facing. I work for a health charity (diff condition though) and our young adults say they've benefited from meeting other people their age with the same condition, as they truly know what it is like whereas they may not want to burden family with how they feel. Most health charities have info/support for young people with long-term conditions, even if it's just a helpline or forum. Diabetes would probably also have info from that perspective.
CF Trust forum: www.cftrust.org.uk/forum/index.php

There's also a programme in England to help young people with chronic illness gain more confidence, though in my experience having a programme is one thing, encouraging someone to go on them is quite another... I've no info about the programme other than the website: www.staying-positive.co.uk

There's also Contact a Family, a charity for families of disabled children, who may be able to give info/suggestions as to how to support her: www.cafamily.org.uk/

Sorry, no advice on how to tackle the diabetes issue though, unless the Diabetes UK website (or helpline?) has suggestions.

Northernlurker - you're spot-on about the treating her as an adult approach and the issues of control, I think. Her parents do baby her (quite understandably), and while the drugs she takes are an appetite suppressant, she barely eats and I can't help thinking that this is partly a control thing.

I do talk to her adult to adult, or at least I like to think I'm down with the kids (have no idea what she means when she texts me, though). Unfortunately, she lives miles and miles away.

Thanks for the links too. I'll pass them on.

NorthernLurker's post and especially the last paragraph is spot on. She's taking control but she needs guidance to take control in the right way and empower herself. However forcing the issue will just make her kick against it even more.

My dd is 15 and has complex congenital heart disease. Currently she's off on a teen jolly with the Children's Heart Federation, discussing and hopefully feeling she's taking control of, many of the issues around being a teenager with chronic health issues, including the dreaded (by me anyway) transition to adult services. I think the benefit of being in touch with others in the same situation is huge. We do our young teens no favours by wrapping them in cotton wool and 'protecting' them from the issues surrounding their health. It's hard.