Thanks Dan
I would be annoyed if I was telling someone how bl**** p***** off I was with my m.s. and they went away thinking I was ‘grieving’ or ‘chaneling my anger.’
The danger is that PWMS will be seen as primarily having an emotional illness because people are focusing on our mental state because that is easier than addressing the issues caused by physical problems.
so you believe that if we, the people with ms express ourselves emotionally, no-one will take our condition seriously?! god forbid that anybody think we’re actually upset about having ms…
I believe there are different degrees of grieving for losses in my life.
16 years ago I did grieve for the loss of many of my abiltities… grieving is just a word used in trying to explain how I felt/feel because I wasn`t able to continue walking, dancing, running, swimming, driving, working, amongst other things.
14 years ago, I lost my mum and dad 3 weeks apart…that was devastating…the pain does get less with time…but I still wish they were here in person again…but they were both ill, so I wouldnt wish them both back as poorly as they were. I often have vivid dreams about them and wake up thinking they are still here and want to tell them about my dreams and I have to remind myself they are gone…and it hurts…a lot!
3.5 weeks ago we lost our pet. we were devastated. we`d had her for 16 years…
So in this reply, I`ve told you about 3 times in my life where I have, and still am, grieiving the loss of my parents, my abilities and my pet.
I do believe that grieving is the right word to use…for me anyway.
No need to worry over what words are used.
pollx
beautifully put, thanks poll.
xx
Well said Poll
It really isn’t rocket science is it.
X
2blackcats - thanks
Yes, I do believe that there is a danger that m.s. will be seen as an emotional/mental illness and if that happens no one will take our condition seriously.
there is a danger that the upset we feel at having m.s. is ‘translated’ into us being in an emotional state.
I am mega-p***** off that I can’t run any more. I don’t sit here thinking about any grieving process. If I say to someone I am worried about my deteriorating physical state they are uncomfortable. Were I to say I was ‘grieving’ or ‘coming to terms’ with things people would feel better because they don’t have to confront the painful reality of m.s.
i don’t ‘present’ any kind of image of being ‘in a grieving process’ to anybody in my life, never have, seriously doubt if i ever will. however , i do use the expression on here, and do so on the understanding that at least some other PWMS will understand the fact that, steadily losing control of your body is akin to the ‘death’ of those functions. i’m not using the term prescriptively, attempting to suggest that the newly diagnosed adopt this terminology, if any should do so, then it is of their own volition. i’m happy for anyone to use whatever polite and kind language they need to to feel that they are being understood.
Thanks 2blackcats -
These forums are read by many newly diagnosed and by their families. There are a lot of threads which make reference to the emotional impact of m.s. Terms like ‘grieving,’ ‘anger,’ denial’ are common.
Like you I hope I don’t present myself to others as if I’m in a ‘grieving’ process but if those around me have seen many references to ‘grieving’ or ‘denial’ or ‘anger’ then those are the labels they will put on me whether I like it or not.
Rail against the m.s. and you’ll be seen as ‘grieving’ - be non-complaining and calm about things and you’ll be seen as in ‘denial’
And gradually m.s. is becoming seen as an emotional condition because the physical problems we have are somehow not acknowledged because people are more at ease, more comfortable with the emotional side of m.s. in comparison to the physical side.
A friend who has m.s. was recently dx’d with cancer. No one, family or professional, asked him if he was ‘in denial’ or ‘angry’ or ‘grieving’
Why has this vacuous terminology become pertinent to M.S.?
The experience of your friend aside, I wouldn’t have a clue whether or not it gets used in relation to other illnesses, but I don’t see why it wouldn’t.
But have you had those labels put on you by people without MS then? I’ve never had anyone do it to me, at least not to my face (If they did though, I’d probably think they were just in denial about how my MS made them feel). I apologise though if anyone (including yourself) has felt like I’ve dismissed their feelings when I’ve used the terminology; I certainly don’t use it vacuously. I see it as a tool that can be used, not a box to fit us into to.
Dan
while i’ve always found that people ask me how my physical ms symptoms are progressing, rather than worrying about some perceived emotional meltdown, it must be infuriating for you if people are constantly worrying about your emotional state.
the number of threads with headings using words like ‘grieving’, ‘anger’ or ‘denial’, are, surely a reflection of what we, the people with ms are actually feeling?! describing them as vacuous hardly seems fair. coincidentally, no-one, family or professional, has ever asked me if i’m angry, in denial or grieving. many years ago, i was asked about anger and grief, in relation to my mothers dx and reaction to alzheimers. later, i was with my dad when he was speaking with a macmillan nurse immediately after he was dx with cancer, she spoke about the stages of grief, too.
we’re all just human, emotions are applied to anything and everything and this site is a place to express what we need to about this pain in the bum (literally and emotionally) condition.
Thanks 2blackcats
My own worries about having m.s. are that I may deteriorate physically very quickly and all that implies, and that I may die.
The emotions the above concerns produce are nothing to do with anger, denial, grieving etc.
I am very unhappy that I am slowly physically deteriorating but I don’t see that as being connected to ‘grief’, nor have I ever felt ‘angry.’
A lot of pwms are o.k. with the above terms and they are appearing with increasing regularity in messages on this site. People have the right to express their thoughts and use the terminologies they believe to be appropriate.
What I am saying is that from my perspective the terms are inaccurate and meaningless.
The danger of focusing on the emotional aspects of m.s. is that m.s. will gradually become to be seen as an emotional/mental illness and those around us will inevitably focus on what they perceive rightly or wrongly as our emotional state.
To be honest, it maybe the case that a lot of this is just semantics; it wouldn’t surprise me if I’ve felt (and can still feel) the same things as you, but I happen to have found the idea of grieving to be helpful & accurate, while those words haven’t fitted for you. But like you say, we’ve all got a right to use the words we believe are appropriate. I’m sorry, though, if you’ve ever felt sidelined or dismissed or anything by those of us who use the language of grief.
Personally, I don’t think we’re in much danger of MS being seen as an emotional illness. Whenever I see healthcare professionals, they never mention emotions. And friends & family only ever ask about my physical health, except maybe for those closest to me. I do think that talking about our emotions is very important, as life with MS can have a huge impact on our emotional quality of life. Stop the average person on the street though, and ask them what’s the first thing that comes to mind when they think of MS, and I bet most people think ‘wheelchairs’, not ‘a bit emotional’. But if you’re experience is different, then I’m very interested to hear about that.
Take care
Dan
Thanks Dan - you are right -
Whilst I do want my m.s. to be acknowledged and responded to I don’t want to be treated in the acceptable?? way, that is, as if I’m angry or grieving or in denial.
Those are not labels I would attach to my emotions.
I am unhappy about having m.s., I feel very sad at times (not depressed, NOT grieving, just sad) and at times I worry about the future.
My experience is that some people have difficulty in dealing with someone who is unhappy or sad because it makes them uncomfortable and these people will assign inaccurate ‘labels’ to a person with m.s. because it is easier for them.
We may well be coerced into presenting ourselves as if we are ‘grieving’ or ‘in denial’ because if we don’t do that we get no emotional support at all.
Apologies for all this profundity on a Tuesday morning!!
hi again,
i definitely share your concerns about the future, sadly it’s the nature of our shared beast. it seems that the majority of people with ms who use this site, spend a fair amount of their time working out just what it IS that they’re feeling, as i mentioned before i do think that it’s human nature to have to factor emotion into any kind of serious dx. i agree with dan, what we’re discussing comes down to semantics.
i do understand what you’re saying krakowian, when i’ve been feeling miserable, it’s all too easy for people to not recognise that there is a lot more at play than JUST sadness. that’s the reason that i come here, because THIS is where i can be as emotional as i need, without fear of being misunderstood and knowing that all the other PWMS can see through the emotion and understand WHY i’m feeling what i’m feeling.
Hi. I just wanted to add my bit on here which is to say that I totally felt that I was going through a grieving process about my dx. I was seeing a wonderful therapist who has helped me a lot with this (not why I originally went to see her) and feeling much more positive about it. I was dx definitely over New Year and I did find it very difficult, but it is sort of ‘sitting’ better with me now, IYKWIM. It might be a label, but having a label for something makes me feel better - and I’m putting it away into a drawer for the moment!
Louise x
Sorry Louise,
But I (…and I suspect a few others) have no idea what “IYKWIM” in your post means?!
Would therefore appreciate your kind clarification. Many thanks.
Dom
Oh, Dom, you may not be up to date with young-person-speak, but surely your grandchildren have taught you how to Google!
Alison
Alison,
I do indeed know how to ‘google’, I just don’t believe I should have to, simply to understand a forum post on this site !!
Perhaps I’m just too old and want things to be clear to start with
(…and as a former IT Pro, I was never a stranger to acronyms, but I still needed to have things spelt out to me the first time!)
Dom
ISUN
(…that means “I’ll shut up now”)
Sorry Dom. Won’t use any more acronyms - actually I only know a few and it was just quicker to use one than typing it in full! The only way I know them is through googling them when I first saw them!
Anyway I hope that we have injected a little levity into what is a very serious thread!
Louise
IYKWIM = ‘If you know what I mean’ I presume? No use of Google, just an educated guess…
I agree it’s just semantic ‘potato, potato’ etc. but also think that
Too much incorrect/ inappropriate use of the term ‘depressed’ takes place
As a musician who can’t use right hand therefore can’t play anymore I am DEFINITELY going through a grieving process in lamenting my performing ability
Hell is a very personal place
A very thought-provoking subject.
hugs to the grieving and non-grieving alike, fluffyollie x