I’m not really sure if I’m supposed to be posting on here, or if this is more for people with MS to talk to eachother. However, I am struggling at the moment and would be grateful of any advice or tips that family and friends of someone with MS could share with me.
My brother got diagnosed with MS a year ago, and as you can imagine we were all absolutely devastated. However, we have also tried to be as positive as we can, in supporting him whenever and with whatever he needs. 12 months after his diagnosis, and he has just been to a check up, and luckily he hasn’t had a relapse yet, which is great news and i am over the moon for him.
But I do really feel like he is struggling to come to terms with it, and in turn so am I. He has accustomed himself to knowing how different his future could be, and I feel like that is partly holding him back, which I really don’t want it to. I really want to support him, and do everything I possibly can for him, so that he can still achieve all of his dreams. But I really struggle with how to talk to him about his MS. When he mentions that he’s feeling numb, or that his muscles are aching, I don’t know what to say. I take the approach of telling him to keep active, and to not let the thought of what might happen slow him down, but i’m not sure if i’m doing the right thing by saying that.
If anyone has any advice on how to react, what to say, how to be supportive etc, I’d be grateful to hear some ideas. Thank you.
Good for you, being a loving and supportive sibling.
There’s plenty you can do to educate yourself about symptoms and how they can manifest - the main information part of this part of this excelIent MS Society site is a good place to explore.
In terms of how to play things with your brother, I am a great believer in listening for cues from the person with MS and following their lead rather than trying to force anything. You are worried about how he is coping: well, he is coping, and he is doing it his own way, as we all must. Plenty of listening and not too much talking/advice is my advice to you. (Says she, ignoring her own excellent precept!)
You can’t make everything all right for him, and it isn’t your job to try. But having loving family and friends on side is a great blessing, and you will be doing all you can by just being you and being there to love and listen.
are you being too supportive? take a step back - - gradually you get used to living with the uncertainty and the awfulness of m.s. The term ‘coming to terms with’ really doesn’t mean anything - one of those statements trotted out by people who themselves have never been in a difficult and irreversible situation. In reality there is nothing you can say when he says he has aches or feelings of numbness - the important thing is that he will be aware that he does have a supportive family.
Well you will read on here that many ppl have had differing reactions from family and friends. Its early days for your brother - but you are doing the best by being supportive. A listening ear, a shoulder to cry on is always welcome, even if he is the macho type.
He will be going through disbelief, grief, anger at the diagnosis. Frustration at what your body won’t do. Annoying that it changes your social life (maybe). But folks with MS do work, play, have social lives, have sex - yep life goes on. But you have to adapt to doing stuff differently.
Probably do him good to meet/chat to others with MS. Try shift.ms for starters - its like Facebook for MS-ers . Check out the MS Society website theres load of info on there for you and him.
But, ‘coming to terms’ with MS, ‘accepting’ it, and being positive about the future aren’t always possible. A year post diagnosis still counts as newly diagnosed in my book. And it takes some people years just to understand the difference in their bodies, get to know MS and stop feeling utterly furious. All the time.
I haven’t accepted or come to terms with MS and I’m 22 years in. I bloody hate it and what it’s done to me and my husband over the years.
As Alison said, listen for cues from your brother. Let him know you care. Find out what you can about MS, but stop trying to make him be ‘normal’ and cheerful about the crappy hand that fate has dealt him.
Don’t forget that he does have MS, it’s not always possible to exercise your way out of feeling a bit down. Fatigue affects many people with MS, even if they’re not relapsing. And the only thing to help fatigue is to rest.
It’s a bloody sad thing, being young and fearing what might happen in your future. Another person can really only help by being there, not negating his fears because they are real and possible, being supportive but not overly so.
He is lucky to have you, but do think about, as Krakowian said, taking a step back. Let him come to you.
Thank you for your reply, I’m definitely going to look in to the symptoms etc. through this website, and try and educate myself a bit more so I can recognise and understand when his symptoms are arising.
Yes I guess you are right, that he is coping, I just don’t like the idea that he’s hoping in silence (as all the men in my family do).
I’ll just try to show him that I’ll always be here for him, and hopefully that will be comforting to him.
I understand that being positive isn’t always possible, and I guess from my own self, being positive isn’t what you always want. But I always feel like that’s what other people want, and I don’t want him to be afraid. But I guess I have to learn and understand that he will have good days and bad days, and will feel a whole host of different emotions. And that all I can do is support him through these emotions.
I know it’s very early days, which is kind of what worries me. I don’t want him to worry about the rest of his future now, I want him to do and achieve everything he wants to while he can, but I know i’m not the one going through it, so I need to understand how he’s feeling.
Thanks for all of your advice, I’m going to do my best to take it on board.
My family, although close, live away from each other, and so I phoned people when I was diagnosed , just to let them know. So when I said I had ms, my brother just very honestly said “I don’t know what to say to that”, and I said you don’t have to say anything I just wanted you to know. Now each time I actually see a family member which happens rarely, my mobility etc has deteriorated significantly from previous meeting, and they all just accept it and get on. The point I guess I’m trying to make, is that life just goes on, and your brother is your brother and always will be. I’m sure he appreciates you being supportive, just be there and hopefully you will both support each other, and any other family member.
As others have said, well done for wanting to support him and stand by him. I’m so grateful for the people who’ve done that with me over the years. And as others have also said, he may well go through various stages as he grieves - denial, anger, depression etc. None of these things are wrong; they’re natural. If you find he doe get angry and maybe takes some of that out on you, remember that it isn’t personal.
What Slug’s brother said is what I was going to suggest. We tend to think we should know what to say, to say the right thing that makes everything better. But there probably isn’t anything that will do that. It’s OK to simply say you don’t know what to say or do, but that you’re there for him, you’re not leaving him, and you’ll always welcome him whatever he’s feeling or experiencing.