Bad Language

Everyday living
42

[quote=he_funk]

Hi

Just to add my tuppence worth of thought to the discussion. It seems like when some people see a phrase like ‘coming to terms’ with MS, they think it means not minding they have MS, or even being happy about it. I don’t think that’s what it means. I’d say I’e come to terms with it. Do I mind? Of course not! I can get angry & frustrated about it. and wish I didn’t have it. But I know I have got it. I know there’s things I can’t do, but I know there’s things I can still do. I can always choose how I spend my time, even if my choices are much more restricted than they used to be. I can decide how I react to any situation. For me, that’s what I mean when I say I’ve come to terms with it. I’ve adapted my life to fit with the limitations on my body.

In terms of some of hte other definitions, I don’t think denial literally means refusing to believe you have MS. I had a long period of denial, even though I knew full well I had MS. For me, that denial meant trying to ignore what was going on. Suppressing any negative feelings. Not asking for help, or reading anything about MS because I didn’t want to have to emotionally & psychologically confront what was happening to me & what might happen to me. And I can still have times of denial whenever a symptom gets worse, or a new one comes long. I try to pretend nothing has changed, or just suppress my fear & blindly hope it’ll just go away. And so that is why I agree denial is a coping strategy - it’s the way my emotions cope, because I fear that if I faced up to the possibility of a new loss of freedom, I may not be able to cope. So I deny it by not thinking about it.

When I first came across the Kubler-Ross model of those stages of grief, it was a revelation, as I recognised that I went through those stages as I grieved the loss of my old healthy body. It isn’t mere ‘psycho babble’, as it mirrored my experience. (The bargaining bit I think means asking questions like ‘why me?’, wishing I’d done things differently, or saying to God I’ll be a good person if only you take this away.)

(Oh, and Darren28, I think the contradiction that Geoff says you make when you say you ‘won’t go down swinging, without giving ms an inch’ is that if you’ve ‘gone down’, then clearly MS has taken quite a few inches :slight_smile: )

Hope some of that helps explain things.

Dan

[/quote

Hi Dan, I think you`ve done a good job with your reply. It makes sense.

polly

43

[quote=spacejacket]

As we are all different - and everyones MS is unique to them - then l agree with Garry -and addressing it as ‘MY MS’ is the most appropiate way.

But telling people what they should be saying and thinking is not appropiate.

Whether you are ‘fighting’ ‘coping’ in denial - and all the rest - life goes on. The sun is shining - and l have been out on my Tramper - charging up tracks and through a fields of stubble with my dogs - and a dear friend riding my horse trying to keep up with me. Dogs are now hosed down and dried off - friend is doing the same to the Toby horse.

Met lots of nice friendly folk down the lanes - car drivers waving at us - l can’t walk now - but it does not stop me from getting out and doing what l enjoy. ldeally, l would love to have been riding - the scooter is the next best thing.

l never mention MY MS to anyone - and if l am asked how l am - l always smile and say l am fine and ask about them. This is not denial - this is my life. Going over all the physical problems is not going to make me feel better - it will just remind me of what l have - and probably bore the person asking.

l remember Ellie saying that she has a strategy for pain - where she grins and smiles and it helps - and it does. Someone said that when they see me l always have a smile on my face and it makes them feel better.

l also swear a lot - to myself - when l am struggling to get about or falling down. So l think l also have Tourettes Syndrome.

Thanks Spacejacket – lovely post.

What concerns me is that if enough people use what I see as inappropriate vocbulary/terminology about m.s then we may well become misunderstood and misrepresented.

If enough people use expressions like - ‘coming to terms with it,’ - ‘fighting it,’ - ‘in control of it,’ - ‘are strong and have a great sense of humour’ etc etc. people who don’t have m.s. will come to believe that that is the mindset of pwms. The result may be that they, our friends, relatives, colleagues feel that they are abrigated from supporting the pwms.

If I’m depressed and worried about the future I don’t want those nearest to me to think I should be ‘in control’ of things or ‘dealing with it’ because they believe that that is what all pwms do.

Vocabulary can distort perceptions - look at the myths that have developed about benefit-seekers, immigrants. If enough people peddal a mis-conception it will soon become regarded as accurate.

44

Hi again Zetland, regarding your reply to spacejacket;

I do get why youre saying you are very concerned that the general public may get the wrong idea about pwms, but in your own circle of family and friends, if you tell them just how you really do feel when they ask, rather than say Im fine or whatever, then you will have done your bit to educate those around you, wont you?

Does that make any sense?

pollx

45

I agree with spacejacket, I tell people I’m fine because moaning about every ache & pain would be a bore and tedious for me and them. I also don’t think we should blame the language used on ‘able bodied’ people. We were able bodied once, some very recently. It’s not their fault we have MS and they don’t, I’m sure they didn’t want us to get MS. friends & family of MS sufferers will also go through shock, denial, anger and hopefully acceptance, they are suffering too.

46

Zetland, I’m sorry if I’ve missed it, but throughout all this, I don’t think I’ve seen you suggest the proper, “acceptable” (in your view) terms you think people should be using instead. You don’t like: “fighting”, you don’t like: “accepting”, you don’t like: “coming to terms”. What should people be saying about their MS, that you don’t find vacuous and - apparently - somehow offensive? What would be genuine, to you? Tina

47

Good question Tina.

pollx

49

I do so hate the expression …I have MS but it doesn’t have me! I’ve come to the conclusion that surely this is something only people in the earlier stages of MS say…because in the later stages it certainly does have us. My entire life is ruled by it ! Nina

50

a fair question Tina. I’ll try to answer it as follows -

If asked how did I feel when first dx’d my answer would be that I felt relieved to ge a dx and then came a period when I felt very depressed.If asked how m.s. affects me now I would say that I tend not to look too far into the future. I have periods of extreme tiredness which means that I have to plan my daily activities carefully. I have a lot of leg cramps and whilst both legs are weak the right one is very weak. At times I have a lot of pain especially in my back.If asked how I am facing the future I would say that I will work very hard to carry on working but I don’t look too far ahead.

I would never use the terms I define as vacuous because they are just that. I would not be happy for others to use those terms to describe me bcause I would feel that they have no business labelling me (wrongly.)

We should keep m.s. talk straighforward and free of hackneyed jargon.

51

Terms that you define as vacuous are only vacuous in your own mind. Most of us have no problem with them.
As for “hackneyed jargon”, well how about “psychobabble” (and the closely associated “technobabble”). Terms usually used by those who really do not have the background to understand what is being said - or the inclination to find out.

Geoff

52

I think we need to be careful about saying which words are appropriate for others to use to describe their own experience.

I can see your point about not liking others to decide which words are appropriate to describe you. But can’t they choose what they like to describe themselves?

For example, when you say you will “work very hard to carry on working”, somebody else might describe that as: “fighting”, or “coping”, or even: “coming to terms”. A difference in style, perhaps, with yours being more literal, but if somebody claims to be “fighting it”, do they really mean anything so very different from: “I will work very hard…” (whether it’s to carry on working, or something else important to them)?

I’m only picking that as one example, but just because someone chooses less concrete language than a factual list, does it make what they’re saying misleading or untrue? Isn’t it possible for something still to be true, without being scientifically precise?

For example, if I say: “I’m finding it really hard to accept tonight”, it might actually convey more information than: “I’ve got a gnawing pain in my right foot”, even though both might be true. One says something about my state of mind, and the other about the facts, but I think most people would have no trouble understanding either, and wouldn’t think one was inappropriate hogwash.

And I am someone who definitely prefers facts before feelings, as my primary mode of expression, but that doesn’t mean I think feelings-based descriptions are dishonest.

Tina

53

[quote=“DoctorGeoff”]

Terms that you define as vacuous are only vacuous in your own mind. Most of us have no problem with them.
As for “hackneyed jargon”, well how about “psychobabble” (and the closely associated “technobabble”). Terms usually used by those who really do not have the background to understand what is being said - or the inclination to find out.

Geoff

My background is in education - I took a degree in Education at UCNW (Bangor) and subsequently gained a diploma in Psychology. That doesn’t preclude me from getting things wrong!

Of course the terms I see as vacuous may seem meaningful to other people. My concern and the reason I started this thread is that if a vocabulary which develops around a certian topic or issue is not meaingful or is inaccurate then it gives a wrong perception of that topic or issue.

As an example - if someone with m.s. is seen as being strong and a fighter and dealing with m.s. (fitting in with the stereotype) but in reality is not feeling strong, and feels unable to cope then there is a problem.

54

And finally on this thread can I thank everyone who has replied. I don’t think I’ve any more to say on the subject!

55

May I be so bold as to say there is nothing wrong with denial.

If it gets someone through a couple of years more of work, pubs and a good social surely that could be a good thing.

56

I sometimes wonder am I in denial or acceptance.

I feel like I have accepted my diagnosis and the symptoms that I have. I’m accepting of the medication I am on and that this is what I have.

However I feel I might be in denial also as when I look at my future, how am I to accept what will happen when I don’t know what will happen?

The diagnosis is not the end game. I am 31 and have been diagnosed 13 months. So it’s fairly new. But with not knowing how the disease will progress, how would I go through the process of accepting that? Equally though, why would I give up on the best case scenario and lie down and accept that I will end up immobile, I will end up incontinent etc. I might not so why should I accept it? I’m trying to be positive and keep my life as normal as possible while also accepting my limitations and my diagnosis.

I understand that for those who have had MS somewhat take over their lives as they know it, the positivity might be a little hard to take. But at the same time, for those newly diagnosed, with all the medication and MRIs etc that are available, why shouldnt’ we hope? Why shouldn’t we say we will fight it and not let it take hold.

Why shouldn’t we rail against it in the hope that we might be the one who has the best case scenario, the ones who get the meds that work or even the cure in our lifetime?

What use would it be if we accept MS as a sentence. I’ll deal with the relapses and the lesions as they come. But for now, I am well. I have MS and I am doing what I can to prevent it taking hold. I’m taking meds with side effects in the hope that long term it will help my prognosis.

It’s not for anyone to kill my hope other than MS. The only way I will accept that I am going to be disabled is when it happens. And until then I will fight and rail against it. I will raise money for the MS society and I will hope that there are better treatments available to me before the MS makes me worse.

If nobody fought against MS we’d have no DMDs and MS would be as it was years ago. There’s nothing wrong with trying to be hopeful.

57

You know I don’t usually stick my oar in unless it’s entirely necessary, but thought this particularly relevant and may inform the discussion- the superb Trevis Gleason has touched on a number of the issues raisied her in his laterst blog which we published yesterday- here’s a quote

58

Well said Meme!! All the best to you on your own personal journey :slight_smile: Thanks for the links Stewart x

59

Have to agree with you Hobs. Whatever works for you personally is good with me. Each to our own eh?

Shazzie xx

60

I have to agree with DoctorGeoff and have found this to be my personal experience of coping with MS or ‘coming to terms with it’. It is very much an ongoing process depending on how well or not I am at the time. For instance, if I am in the middle of a nasty relapse the anger/depression may well come to the fore again but at least I can recognise the cycle and for some reason this helps. MS isn’t just a matter of coping with the physical difficulties and we do need some words to describe the emotional turmoil. One of my favourite expressions these days is to describe it as an unwanted roller coaster ride both physically and emotionally … and qualify that with ‘I never did like roller coasters’

Tracey x

61

OKay Zetland. Your post has brought a huge variety of opinions and thoughts.

Im just so glad it didnt turn into a slanging match and you werent hurt for airing your views.

Thanks for the debate hun.

luv Pollx

62

Well It’s like I always say ‘I have ms but ms doesn’t have me’ ‘Tomorrows another day’ ‘always look on the bright side of life’ ‘there’s light at the the end of the tunnel’ ‘I won’t go down with this ship’ ‘mama always used to say ,life is like a box of chocolates’