Advice on Supporting a Friend

Hi everyone, we were hopeful you might be able to help us understand what’s currently going on a bit more.

Our friend was finally diagnosed with MS in February this year - having had a relapse. This was suspected, but not confirmed. He was fairly cagey about telling us what was going on, and still plays down the illness very strongly. We know this is his choice, and respect that, so have tried to just carry on as normal - but obviously making allowances for mobility etc. Visiting him instead of going out and such if he was struggling.

He had another relapse soon after the one in February, but has - luckily - since seemed to go from strength to strength and physical symptoms are not evident any more (although this obviously does not mean they are not there!). However, our friendship group has noticed a massive personality change. He is now a lot more irritable, only likes to talk about specific topics (certain events from the past), and has been extremely irritable. We are now at a point where multiple people are now avoidinging him because of this, and how difficult they find things. He has no interest in anyone else’s lives, does not ask about such (even if asked “How are you?” he won’t ask back etc.), and gets extremely aggressive about certain - very conservative - opinions.

We’re all finding it very difficult as he’s a close friend who we want to be there for, but he’s not acting like the person we know right now. We’ve tried to make allowances because we can’t even begin to understand what he’s going through, but we’ve now started asking if maybe we could talk about something else, or just saying outright that we’re a little bit tired of talking about xyz. This is usually met by a lot of glaring and aggression, but we worry that if we don’t say anything we’re excusing the behaviour and it will continue.

Any insight, advice, or assistance would be greatly appreciated. We want to be there for our friend, but worry we’re doing things wrong, handling the situation badly, and upsetting him.

To be honest, you are far better placed than any of us to decide how best to play things. Your understanding of your friend as in individual is worth more than anything we can tell you about caring for or being a person with a chronic progressive neurological condition.

For sure, the guy is probably struggling with all kinds of difficult emotions at the moment - fears about the future, loss of cherished hopes, worries about money and love and security and fear of disability and incontinence and poverty and loneliness etc etc. But you know that already.

My advice? Cut him some slack where you can, as you are doing: he’s having a tough time and kindness and patience rarely go amiss. But please don’t baby him: he’s your friend and equal, not a half-witted infant. If he’s behaving like an arse, do say so; that’s what friends are for. Please also remember that he would probably be infuriated if he suspected that his friends were getting into concerned huddles behind his back and talking about him. I certainly would be, wouldn’t you?

Alison

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I suppose the problem is that we don’t feel like we’re well placed due to the massive personality shift. This isn’t the person we know, even though it is. Does that make sense?

We’re tried to talk to him directly, but this leads to him getting very angry and then ignoring us. Others are now in a difficult situation where they don’t want to be around him at all. He plays very strongly on being unable to do things without assitance - even though this is not the case. We’re very concerned that he’s damaging friendships which will be hard to heal. I personally am finding it difficult as I’ve known him for so long, and the change is so dramatic. I don’t really know what to do at all.

We’ve discussed it as a coping mechanism for ourselves, especially to consider how to handle the behaviour in a uniform way. We had hoped that everyone providing a similar response would enforce the fact that we don’t want to be on a continual self-involved loop about his ex partners, but this hasn’t helped at all. It’s upsetting us, upsetting his current partner, and none of us are sure how to handle it because telling him directly hasn’t done anything at all.

As you can possibly tell from the above, it’s causing a lot of hurt and frustration - but is probably doing so for him as well. We just wondered if anyone else had insight in terms of personality change which would allow us to support him better, and to minimise damage to our relationship.

Thank you very much for your reply.

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There are two ways that MS can make us into different people:

First, the experience of having MS will shape a person’s behaviour and attitudes just as any other significant life event or experience will do. Bad stuff tends to make folks behave oddly. Because this kind of illness does take up rather a lot of space in a person’s life, the effects can be pretty marked, for better or for worse, and can and will change over time (again, for better or for worse). As far a friendship goes, it is just a matter of weathering the storms to the extent that the friendship is deep enough to make this a reasonable investment of your time and effort.

Secondly, MS can occasionally have a direct effect on the thinking and behaving parts of a person’s brain and this brain damage can cause personality change. This is an altogether more problematical and serious - and much rarer - matter and tends to be associated more with people in more advanced stages of disease. Generally speaking, ‘normal’ MS tends to leave those parts of the brain largely intact - thank heavens.

It is, I would guess, overwhelmingly likely that your friend’s troubles fall into the first category. If he’s worth it, all you can do is stick with him for as long as you feel so inclined, waiting for the destructive emotional storm to settle and the person you thought you knew to re-emerge. And the storms can settle: many of us look back on those difficult early months post-dx and see that we did go a bit bonkers.

Alison

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Your friend is lucky to have you he will still be coming to terms with the diagnosis of ms this can take some time months may even longer he will have concerns about work medication he will be offered and the support he will have it will all settle down

In time will he return to same person time will tell we are all different try and be there for him he will need someone

It took me 2 years at least to come to terms with ms it was a major life changing avent giving up work getting some money to live on coping with unpredictable symtoms it will change a person’s personality to a degree .