How do I support my brother and SIL in living with Multiple Sclerosis?

[QueenEagle]

Does anyone have any experience of Multiple Sclerosis, either personally or have family members suffer from it? I have read leaflets and know what to expect on a physical level, but how do I help when the support needed is more emotional?

My SIL is 21 and was diagnosed last year. She has recently begun to talk more openly about her illnes and seems to be accepting it at last. However, my brother appears to be having a job handling it, even to the point of not mentioning in it in her presence. He wants to come to see me on his own to talk about a visit they have had from an MS nurse who has discussed things in great detail with them.

I'm a little wary however of talking about SIL behind her back, as it were, and feel that she should not be subject to the family talking about her rather than with her iyswim? But, of course I still want to be able to give support to him as well as her.

If anyone can offer me some advice here I would be very grateful. Would I be wrong to discuss things with my SIL directly, against the express wishes of my brother do you think? I'm in two minds whether to sit on the fence and just be there to listen to both of them when they need me or be pro-active but don't want to cause tensions within the family.

[mrsflowerpot]

Enormous sympathy, QE. My dad has MS - I'm not sure how much help I can be as the circumstances are quite different, he was well into his 50s when it started for instance, your SIL is very young. It is good that she is starting to be able to accept it, hopefully this will help her stay positive and get on with her life. My dad pretty much gave up when he was diagnosed and decided his life was over, which of course it wasn't and there was still plenty he could do.

I think that you will have to take it one day at a time, as they are still adjusting and learning about what their lives will be like. I agree that if your SIL wants to talk about it then of course you should. Apart from anything else, she will need someone other than your brother to talk to about it.

What I would say is, talk to your brother about how it's affecting him. It's an illness that is very hard on the partner too, because the sufferer can go from almost total normality to almost total dependence, and then back again, pretty much overnight. And I gather (and it's certainly the case with my dad) that it often goes hand in hand with depression, which is again very hard on the partner/family. If they've just seen the MS nurse for the first time, he's probably very scared, and he might just not want your SIL to see that or hear what is really going through his mind. It's wonderful that you are there for them both emotionally and on a practical level.

[kate100]

My mum and my best friend both have MS. My mum was diagnosed in her 50's and has other health problems as well, so it is very different from your SIL. But my best friend was 23 when she was diagnosed. She went through a period of complete denial, as did her family, when anyone refused to consider the possibility that it could all be really bad at some points, they chose to ignore it. Which it sounds like is what's happening in your family at the moment. My friend decided that knowledge was the best weapon for her to cope with her diagnosis. She is very well supported by the MS Society, who have a website and a helpline, which is staffed by health professionals and other suffers, including my friend!! She has also become involved in updating the website to make it more relevant, as it is a young persons disease and the website can be a bit 'doom and gloom' and a bit patronising. It took a lot of persuading on her part that she still wanted to wear high heels and go out on a friday night and maybe those issues need adressing. I'm guessing that if your SIL has just been diagnosed she is suffereing from a relapse at the moment and is probably pretty poorly, which won't be helping her at all. As she starts to feel better it may get easier to talk about it. Your brother needs to realise that this isn't going to go away and there are things that need to be discussed, but there is help out there, they just need to ask for it. On a positve note, my friedn has come a long way in 5 years and from complete denial, to last night discussing with me how was she supposed to carry her handbag with a walking stick!!!! Feel free to CAT me if you want to.

[poppyknot]

I have recently been diagnosed and am still unsure how to deal with it. I haven't told a lot of people but do feel I need some to talk to if only once on a while to have a rant.

DH is seems quite accepting but as MRsFlowerPot says the partner need support too. The visit to the MS nurse might have been traumatic - there is a lot of info to take on but help is there for partners and family too.

Just having you to talk to must be a great help to your brother and I am sure that your SIL will realise that he needs to talk it through himself.

As it will be a situation with no resolution instant or otherwise (ongoing and everchanging as it is) I think you will just have to read the needs as they appear at the time. I have found that days can go by when I almost forget and then others when I think of nothing else. THese are not nec. related to how I feel physically.

I haven't yet signed up with any of the help groups but i know they are there and will prob do so in time. DH isn't a great 'joiner' or 'chatter' anyway so his needs will be different maybe from your brothers.

Maybe your brother could mention to SIL that he would like to speak to the nurse himself again, either with or without her. THey are there to listen as well as tell.

In our area there is a group meeting of the newly diagnosed which is as much for partners as for the MS people (We are not sufferers!). Something like this might be of help.

MS is now a part of our life that needs accommodation and understanding that things will change.

Having considerate and empathetic people like you around can only be a good thing for your bro and SIL. Whether to discuss it with SIL directly or not might be more a matter of family dymanics than the MS situation itself. In my case I have not yet told my immediate family, a decision I reconsider every day.

You sound like a treasure of a sister.