do you think having really well looking people who live with MS in your media all the time although helps those just diagnosed and some in limbo. but for the general public and the gov esp those doing benifits or taking from us. atos sprins to mind lol they obviously really dont know any thing about ms.
surely they need to see the real side and possible dark side of ms its not somthing i personally am wanting to portray but in the wider sceme of things its essential in todays were all benefit scroungers and not people living with a dengenerative disability.
please ms soc its great the campains that you do but i feel we need to start getting real with the public as i for one am fed up because i look well i certainly do not feel it having people think i have nothing more than a limpy leg or just get tired alot. i wish lol
it would really be helpful to have different opions on this and maybe even use this subject for the magazien???
i too feel the same as you, that ok i have ms i can walk with a slight limp but cant go far, i cant do much in the house because of severe fatigue i dont go shopping i cant do lots of things i love doing and feel as though i should be at work like others do because they can. last time i worked i went home to bed and didnt see my kids cos i had to go straight to bed is this what were supposed to do ?
they always seem to put on tv someone who does work and has managed for years, i feel depressed adn down because thats how people begin seeing people with ms as lazy and scroungers
I think that portrayals of healthy looking PwMS are very helpful to us, as PwMS. It proves the point that we’ve a serious underlying illness - a life sentence - but that we’re getting on with it as best we can.
If we need assistance or support, it’s normally from people we’re in close contact with at the time. While it can be hard and frustrating work for us having to explain ourselves to apparently healthy individuals, the MSS & MS Trust have plenty of literature we can pass on to these contacts if we’re not getting what we need. It’s the general public who need educating by the MSS.
As a separate point on the same theme, the MSS can’t please everyone with their media campaigns. Remember those posters in the 1970s (I think) showing a picture of a woman with her spinal column torn out from the poster? Those were the best imo but I gather that the MSS had to withdraw them because of objections.
Finally, as one gets older, MS becomes less of a perceptual problem as friends and family succumb to more life-threatening/ending conditions, sadly. Competition to have the most serious condition starts up again when you get to your mid-70s, I think lol.
It is good to show that people with MS can some times continue to work but we also need to show that some of us cannot. We need to educate those who don’t understand how variable MS can be and how unpredictable its progression is. We need the full picture seen in the media so that those who are ignorant of how MS can be are educated to its symptoms. Awareness is very important but FULL awareness is what is important. Tell people how the fatigue feels,how today I can be fine and tomorrow I may be unable to walk but yet may be in a few weeks or months I may recover but then again I may not.
above is a link with my facebook discussion on this same subject lots of fedback there too. it was based on the fightback picture the soc put up please read its a good discussion and can do with feedback. thanks to those commenting too x
I think that I am with moomoo123 and sambo on this:
There comes a point when the “Doesn’t he look well!” comment gets a bit trying - as i am standing there propped up by two sticks, with the FES just switched off, and some pain in my fingers and toes that the Gabapentin is just keeping down - and I am luckier than many. The people who make these comments do not see me taking 2-3 minutes to climb the stairs. They do not see me funiture hopping just to get from one room to the next. In fact, they really do not see me with MS.
No, Lolli, I am not trying to compete with other people in their mid-70s. Most of the people i know of similar age have their own problems and I wish that none of us had those problems.
Does the society present stories of the Person with MS who (although wheelchair bound) signs up to do a zip-wire for charity? Who remembers Jacqueline du Pré now - and she was hit hard by MS in her 20s.
If it can get someone as talented as her, it can get anyone of us.
All any of us can do is to keep going as long as we can, and hope to find something else that we can ocupy ourselves with, rather than slide into what may be a short and very sharp decline. How about some more stories about the fighters, not about the ones who really do not have it so bad …
ok ill share a little of what ms has taken from me… i used to sing and have on stage and with church on many occasions that was a passion of mine till ms took my voice and now i cant hold a note esp high notes like i could.
i used to also perform and dance on stage again with church and in the open air again this was a passion of mine but i cant even walk inn a straight line, i fall over without warning, cant feel my feet to know where im stepping.
and now my passion is photography even this is tainted by ms as my eyesight is poor and can only see out of one eye due to optic neuritis with the ms… i get bouts of it so i dont even know how long i will be abnle to still shoot things i love.
my last bout i couldnt see properly at all out of my good eye so please dont say its only important to show the better aspect of ms only yes of course thats important to do it will esp help the newly dx or those not yet it helped me as well. but those outside of that there are realities that are sadly not that and they too need a voice and for otherw to understand.
maybe after what drgeoff said in his post ms society could do a campain with… im a fighter and i have ms?
yes all of us are fighting this as best we can but were often not just fighting ms are we??? we are fighting those around us to understand how we feel, we are fighting the government to not take away out lifelines, we are fighting the public perseption of us and we fight every day just to live as well as we can no matter what stage or type our ms is.
i fight with a husband who even after i explain how its affecting me still burys hios head in the sand and thinks im perfectly well with nothing wrong at all. this battle is my hardest.
I think it was that campaign in the 70s(?) that made a big impression on me.
I remember being in my dad’s car, stopped at lights under the bridge at Cathcart in Glasgow. There is a billboard there and I still remember the MSS poster on it. Now, given that this was nearly 40 years ago, I was very young and that I didn’t have a clue about MS at the time (or for the next 25 years), the fact that I still remember it is quite extraordinary. The image was a woman with arrows pointing to all the different symptoms she had. I remember thinking, “OMG. I hope I never get that!”
That poster said the kind of thing that people need to know. People running marathons etc is great for newbies as it gives them (real) hope, but it does those of us with worse symptoms no favours at all.
thankyou thankyou thankyou for posting this, thisw is the kind of thing i mean and i totally agree with you from all the things you said. we need impact and we need the public and gov and everyone out there to really see the things that ms does.
i agree the campains the ms soc does now is fantastic for the newly dx or limbo or even those with mild symptoms it does give hope and i certainly never wish to see that gone ive had ms for i dont know how long but dx in 2008. and at first i couldt sleep thinking i was going to die but now i see ms is not normally like that but for some it may just be faster progression.
I remember them too and clearly you and I are not the only ones. Those posters remain etched on the minds of many of us, even though most of us (I guess) saw them when we weren’t very old and were decades away from having MS ourselves. That was one fabulously successful awareness-raising campaign. We could do with another like it. MS isn’t very nice, and I think we need to be pretty frank about that if we want people to take us seriously and put their hands in their pockets to help fund research into curing it.
i again totally agree i know its scarey for those with ms to maybe think of it like those poster portrayed but we really need to get real and hit hard with the media in this kind of form. im really not sure in todays cotton wool its not real culture the soc would really try a hard hitting campain like those from the 70’s but it really is so importyant and like you said alison if we want as a society and people with ms to be taken seriously and show the rwealities of Ms then we need to do somthing like this again.
i know the things from around the 70’s early 80’s really stick in our minds i still remeber most of the public info films from then they scared me but they got the point across where as things from just 5 years ago i dont really remember as they wernt powerful enough in my opinion.
thankyou ms soc for the work you do do and i wonder if campains can aim more at public hard hitting campains in future more than really being aimed at those already with ms surely thats the target audiance we really need to attract.
i could help maybe with the help of others here in trying to get a bit more daring…
would love to hear from the ms soc on this thankyou
Some years ago on the old board we were asked to give ’ feedback ’ for a forthcoming MS Soc. campaign. One of the suggestions was to have a photo of say, a man using a wheelchair and a woman standing dressed for work with a line saying ’ Jenny and John both have MS ’ or ’ jenny and John have more in common than you think ', you could vary the people in the photo,ie woman using a wheelchair at work,man standing,or child and adult,etc.
The idea was to point out the different kinds of MS and MS symptoms and the wide age range of pwms,as well as showing that some can continue to work, life goes on etc.
It was poo-pooed by the Society who had already made up their minds as to what kind of campaign they were doing but I’ve always remembered it and think it would be such a good way to explain some aspects of MS in a clear and easy to understand way. ( After all we don’t want to confuse em do we?)
I remember the ‘spine ripped out’ photos and I thought they were great, but there were complaints apparently,so they were shelved. I would like to see more campaigns, I think the Society can and should do better.xxjo
For what it is worth the MS Society magazine is a turgid humourless Ad Mans dream.Any Newby opening it for the first time will wonder what club they have joined with all the adverts for disability aids. That gives the impression that MS =Wheel chair. We know it MIGHT down the years,but not the first time they open their first copy of MS Matters.There is a thing called t’internet for looking at pictures of shiny stuff which makes a difference to one’s quality of life.
The management would bleat on about revenue,advertising deals,projects for members,blah blah. The advertising should be in a separate envelope,so that anybody who wants to look at ‘the gear’ can do. That magazine must reach all corners of British society, so MS means disability and lots of disability gear.
Without advertising funding from those ads for wheelchairs and catheter systems, the magazine could not exist. It not a matter of principle, it’s just a matter of arithmetic!
you know ive often thought that when i first was dx and joined the ms soc and got my mag i resigned myself since the first mag to needing to look at wheelchairs ect almost resigning myself to thinking im gonna need these because ms = wheelchair. its a subconsious thing that i cant shake. and maybe for other newly dx its the same when they see all those adverts?
maybe having it sepate from the mag is a good idea and maybe have a more balanced reality of ms portrayed in the mag?
hi jo
yes good ideas there too because ms is indivdual and there are diff types and stages so showing that would be a heal;thy thing.there are lots that work but theres also lots that cant and i think as ive seen its only the ones who do and can whom are getting interviewed in the media to show everyone that everyone is like this with ms.
the gov of course like this portrayal of ms because it fuels the all ms claimants on benefits are scroungers and fuels disability hate crimes not only in the media as a whole but specifically at those who know nothing about ms and even more scarey gov bodies or hirelings of gov like atos.
even i understand the need for advertising revenue to keep things like the mag going but surely for someone who see’s the mag for the first time, is already scared ms means there going to die or wheelchaire whatever surely then there must be away of both showing those adverts but also having some sensitivity to those newly dx or in limbo who like myself and everyone with ms reading ( we were all newbies once lol) maybe have a separate booklet inside the mag just containing the adverts… still in there but you wouldnt have to look if you felt uncomfortable. the advertisers are still targetting there audiance and the ms mag would still get the much needed revenue???
