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Grieving Process

Why do some people describe ‘coming to terms’ (whatever that means!) as a sort of grieving process.

Today being the Anniversary of my father’s death I found the grieving process after his death totally different to what I experienced after being dx’d with m.s.

Indeed I think that technically you can only grieve for something/or someone who has died – and I’m still alive!

Let’s stop using these meaningless cliches

I have never used the term in relation to MS but we are not all the same, what works for one doesn’t work for everyone.

Live and let live is my motto.

Jan x

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I think whilst it is a cliche, it is one that has adequate gravitas to convey what a shitty situation diagnosis is.

But you are correct; it is an attitude that seldom provokes an appropriate sense of hope and optimism that we MS’ers are potentially afforded by modern day levels of care and drugs.

it is said that a positive mental attitude is instrumental in staving off relapses and progression… not easy when you are provoked into a sense of profound loss… .

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i agree.

it is said that we grieve our old lives and our old fully functioning body but pah!

sorry that you have such a sad anniversary today.

but at times you will recognise our dad in yourself - things you say that were what he would say.

i lost my mum 13 years ago but i carry her with me in my heart.

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So doctrinaire, krakowian! No need to be Stalinist about it’ I don’t think - people are welcome to grieve about a broken finger-nail if they want to without having the KGB semantics police bang on their door at 0400. Free country and all that. There isn’t a British Standard for grieving; we all do it in our own way.

Alison

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The problem is when the newly dx’d feel they ‘have to grieve’ and ‘come to terms’ etc with the dictats (Doctrinarial - Alison ??) that have become part of having m.s.

Perhaps in reality they don’t feel like that at all.

and no, I certainly haven’t developed an enhanced sense of humour whilst on my ‘m.s. journey’

a profound loss of what?

I have to confess, I’m one of the ones who identifies with the grieving stuff. I’ve never actually had anyone close to me die, so I can’t compare. But reading through the stages of grieving, they’re all things I can relate to. I was in denial for a long time (not that I actually had MS, but thinking I could carry on as normal, and ignoring symptoms); I got angry; I got depressed. I’ve not necessarily followed them in order, and I can still experience those different stages at different times. And I see other people going through those stages too. The final stage - acceptance - is probably the stage I’m in now, where I’m not looking back so much at what I was losing, but looking forward to the future to what my life can be now.

When I came across the concept, it was something I found really helpful. It reassured me that what I was feeling was normal, and even to be expected. And that’s why I quote the stages of grief to others, in the hope that they find it useful too. If they don’t, then fine - ignore it. But we’re all different people, and there’s never going to be a one-size-fits-all model for how we react to having MS, or what we’ll find helpful along the way.

Dan

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when i use the term ‘grieving process’ about MS, i’m certainly not trying to be prescriptive to the newly dx. i very definitely identify with the saying, it’s pretty much unavoidable for me as 3 days after my dx, my mother died. i was oblivious to the early stages of my MS, i found out about it fairly brutally, after a fall started a huge relapse. suddenly i couldn’t walk properly, i couldn’t work any more and i’ve been fighting daily pain for more than a decade. that translates, for me, to the death of a lot of my life.

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I read recently that, when subjected to formal scrutiny, the old 5 step Kubler-Ross model (which stem from how we think about our own deaths, by the way, not other people’s or other sorts of loss) didn’t stand up at all well! The researcher had been led to the sad conclusion that it was a load of more or less filtered word, and that the reason that so many of us feel that it chimes with our own experience is largely a matter of confirmation bias (‘I’m feeling this way…ah! - I must be at this or that stage of 5 part process!’ - while paying less attention to feelings that don’t obviously fit.) But I guess that all comes back to exactly your point, Dan - if it helps, it works. One does not want to be like the economist who says, ‘Well, it’s all very well in practice, but does it work in theory?’

Alison

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krakowian,

I think people with MS often ‘grieve’ that they can no longer do the physical things they once could?

For example, one of the first issues I had was a slow but sure decline in the strength and flexibility in my right leg. This left me unable to run ar even walk briskly. I grieved that I was unable to do that anymore , having been able to do it for ages before.

There is a ‘loss’, however I would never equate it to losing a loved one. I never found it the same thing at all.

I believe in the case of MS, ‘coming to terms’ means learning and becoming familiar with new physical limitations.

Does that make any more sense to you ?

Dom

(…OK at thinking,…but not always good at putting my thoughts into writing )

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I don’t think I’ve ever really “grieved” about it.

But I don’t think anyone’s ever tried to make me feel that’s what I’m supposed to be doing.

I feel a bit sad and frustrated sometimes that things that used to be easy now seem like an assault course, but I’m not sure that’s really grieving.

I think subconsciously (I guess you’re not going to like that term either) I’d already recognised I was ill for some time before diagnosis, so when it was formally confirmed, it was more a case of: “So that’s why!” rather than really being shocked. I’d never actually guessed my illness was MS, but the light had certainly been beginning to dawn I wasn’t well.

My reaction was something along the lines of: “Oh well, I’m sure I’ve had it years, but now I know!” I’m not saying it was welcome news, but welcome in the sense of not being mad, and explaining a lot of things.

T.

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Just to add, when I mention it to others, it’s not an attempt by me to try to label people & fit them into a box. Rather, it’s when people get distressed (if that’s the right word) when, for example, suddenly they find they’re getting really angry all the time & yelling at the kids. It seems like they’re worried that they’ve had a complete change of personality, and will now feel like this for the rest of their lives. So I’ll tell them about it to see if they find it useful info.

Dan

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Does the terminology we use mask how we really feel and have we been conditioned to use rather vague terms because our friends and families are less uncomfortable with them.

People don’t want to hear that we are ‘depressed’ - the term ‘coming to terms with’ is far more acceptable to them.

Being unable to do some physical things is ‘translated’ into - a ‘grieving’ process.

Why can’t we keep it simple and say just what is happening to us physically and mentally.

Tell someone you are unhappy about having m.s. and they feel uncomfortable.

The point I am making, not in a very good way I suspect, is that we are in danger of being conditioned to use terminology which avoids how we really feel about our m.s. because this is the terminology friends families prefer to hear.

should add that I’m in Yorkshire the bastion of straight talking - no mincing of words up here on the wild moorlands and windswept hills.

You have a point. People sense danger when they are faced with difficult things called by their real names. No wonder they are quick to pop such troubling matters into a nice tidy little cupboard marked ‘the grieving process’, lock the door fast to be on the safe side, and turn on the telly.

Alison

hiya

interesting thread!

yes we are being conditioned to all sorts for all sorts of reasons!

however i have never thought of having ms even remotely similar to grieving, simply because i am not dead.

i answer honestly as to how i am/coping etc which is ‘physically i am f****d but mentally good/struggling/managing’ depending on which day i am asked.

i am genuinely happy cos thats a state of mind. i smile and laugh everyday cos i always have! even on the days i cant get out of bed i still manage to raise a smile when i hear the birds tweeting outside. theres good things happen every day-just sometimes you have to look a wee bit deeper within yourself to truthfully admit life is not all bad! (i am well aware it sometimes feels that way!)

try playing some positive mind games with yourself!!!

ellie

thanks Alison – but who ‘drives’ the m s vocabulary?

do we, the pwms, control the vocabulary or is it those who don’t have m.s. who are using vocabulary which suits them whilst in reality we are mis-represented. I suspect it’s the latter.

e.g. should I say my right leg is useless and I’m very unhappy about it - OR - I’m depressed and grieving. One implies a physical problem the other a mental problem.

That’s an interesting angle, I’ve never thought about using the grieving terminology in relation to friends & family. I don’t use the vocabulary of grieving to make things more palatable for them. I only use it for myself and with fellow MSers. And I only use it to do with the wider picture of my emotional experience of life with MS. Responding to day-to-day symptoms is a bit different. As an example, as I write this now, my leg is painfully spasming. It’s bldy annoying & I’m p*ed off about it. I wouldn’t say that, therefore, I’m just in the anger stage of grieving though. This is more an isolated case of anger. But if I found that I was constantly getting angry with other people for no real reason, and always short-tempered & stressed about little things that normally wouldn’t bother me, then I’d think that maybe the constant state of anger is part of grieving.

But I wouldn’t then use that phrase for the sake of others. I’d only use it for myself & with close friends, to help me figure out what support I need, and things I could do to help me process that anger instead of always kicking the cat & yelling at customer service reps. I happily say how I’m feeling to friends & family (I also live in Yorkshire!), and I don’t particularly care about whether or not it makes others uncomfortable - if it does, that’s their problem, not mine.

Dan

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i’m in cleveland, the chemical cesspit NORTH of yorkshire. if anybody wants to see ‘grim up north’, this would be an ideal place to go! i think the concept of ‘straight talking’ is pretty much defunct here, given that it would require being more pleasant than usual and as i say, i’m in cleveland.