Last reply 1 month ago
Understanding!

Hey all πŸ™‚ im hoping this is common with others suffering MS…. people just dont seem to understand anything about it or what you might be going through! Friends… family and work colleagues see you looking normal and presume everything is fine…. I never want to come across dramatic but sometimes want to shout i have MS for gods sake lol…. is ythis normal?

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ellarosepetal
1 month ago

@desn i understand i had this aswell i remember i got my diagnosis and someone at work said oh you still have that when i had a MS nurse appointment πŸ˜‚
I finding it difficult to juggle life at times id love to do so much more but have to go at a slow pace. Its really hard when people just don’t understand… And what about when relatives say you look well aggghhh πŸ˜‚


desn
1 month ago

Hahaha yes that nugget lol… ‘you look great’ when inside your in bits! πŸ˜‚ i find myself saying all the time.. eben to people really close to me that I am fine.. even when im so not!


ellarosepetal
1 month ago

@desn we are fabulous and unique πŸ˜‰


watsoncraig
1 month ago

@desn it seems normal along with the misconception that it’s curable


rob_burton
1 month ago

All we can do is help to educate people


ladylaura
1 month ago

@desn..just yesterday someone didn’t realise I still had m.s as ” you’re not in wheelchair”…


vixen
1 month ago

@desn, my most common (predictable and annoying) experience is hearing something like ‘Oh, my neighbour’s cousin has had that for thirty years, and he’s fine…….’


elisabeth_turner
1 month ago

@desn i hear ya! I’m 20 years in and still close family will ask what’s up when i have to go for a lie down! Invisible symptoms are so hard sometimes.


desn
1 month ago

@ladylaura wow thats awful!


desn
1 month ago

@ellarosepetal yes we are πŸ™‚πŸ™‚πŸ™‚ if a little slow clumsy and perm tired πŸ˜‚πŸ˜‚πŸ˜‚


desn
1 month ago

@vixen everyone knows someone who has had it lol…..


desn
1 month ago

@elisabeth_turner thanks so its not so bad im only a year in and getting told you look fine!


ladylaura
1 month ago

@elisabeth_turner.. them there’s the looks from those who think you’re drunk @ 8am going to work with a wobble!


manc1
1 month ago

@desn
The thing is you have to be young and good-looking to get MS. Ugly people don’t get it.


keld
1 month ago

Battle everyday with unsupportive ununderstanding people and it is soooo frustrating !!!! With brain fog , memory probs etc. I have started to say ‘ if u had someone in ur life with alzimers would you moan at them ? ‘ and when they say ” no ” i respond well dont bloody moan at me then πŸ™‚ i have become an aggressive person to people these days who just are not considerat xx


henrietta
1 month ago

@desn Oh yes, I hear you! I tend to tell everyone everything and since dx in July have had a range of responses from ‘oh my god you’re going to be in a wheelchair’ (sister) to ‘don’t take the drugs, alternative therapy will fix you’ (other sister) to ‘just take the drugs and shut up / that’ll cure it’ (husband). I’m like it’s a chronic illness, it’s not going to just magically disappear, I’m probably not going to end up in a wheelchair (but if I do I’ll cross that bridge when I come to it) and I’m taking the drugs! I haven’t had the ‘but you look fine’ response yet, but am sure it’s only a matter of time! I go open water swimming and yesterday I overdid it a bit (swam 2k) so was a bit slow getting out as I wasn’t sure about how my legs would be, and I got to say, fo the first time, ‘I’ve got MS, I can’t hurry’ as the guy waiting behind me was getting all impatient. It shut him up πŸ˜‰


desn
1 month ago

@henrietta wow you have a very understanding family! Especially your husband! 😱 people can be so cruel…..


bernadette
1 month ago

@desn as you can read from replies already what you describe is common, typical, usual, and yes it is extremely frustrating. Online this week I read the perfect sentence..
You have to have MS to get MS
And that sums it up for me. We can make ourselves angry and stressed by expecting anything else from people, even those we live with. It leads to stress and making our symptoms worse. We have to let it go. Easier said than done I know. I try to just say ‘thank you’ when people say I look well. Sometimes I add, ‘it takes a lot of work to look this good’ Sometimes I need to lie down so I just say that I do and take myself off for 60-90 minutes, they can think what they like.

I figure all we can do is live as well as we can with MS. You do You, and hang the rest – is something else I tell my angrier self.
Good luck!


henrietta
1 month ago

@desn I think they all mean well πŸ˜‰ husband understandably wishes it hadn’t happened, also he can’t ‘fix it’ so is a bit at sea. In some ways I think it’s probably harder for those around us to deal with it…


abbie_haslin
1 month ago

Totally, on a daily basis and even with family too!


desn
1 month ago

@henrietta and of course you are not allowed to feel down! Chin up lol…. best foot forward and all that!


henrietta
1 month ago

@desn πŸ˜‚


desn
1 month ago

@henrietta forgot stiff upper lip lol


cayce_dever
1 month ago

@manc1 🀣 Adding this to the traits of MS patients when I tell ppl at work now


henrietta
1 month ago

@desn mustn’t grumble… worse things happen at sea πŸ˜‰


desn
1 month ago

@henrietta πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚ no piont crying over……


rachiervn1983
1 month ago

Yep I feel like this every day recently 😟


desn
1 month ago

@rachiervn1983 great isnt it lol…. but hey still need to get on with it i suppose…


bullman
1 month ago

@desn Soon after dx I had someone say β€œI once had that”


desn
1 month ago

@bullman πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚ wow! Thats def the best one I have heard yet!


jayjay10
1 month ago

@desn

I completely understand where you are coming from mate. On more than one occasion I’ve had those moments, they keep coming as those without the diagnosis will never understand, they may try to but never will unless going through what we’ve gone through.

All the best!


bullman
1 month ago

@desn When I could walk but used a wheelchair for longer distances, I was putting the chair in the car when a young lad said β€œit’s Lou” (off Little Britain)


bullman
1 month ago

@desn Sorry I meant Andy


chezy17
1 month ago

To be honest, everyone around me is really understanding, especially my family and friends. Work is also understanding about it all but I’m lucky in respects that I really only get fatigue and a few aches and pains that didn’t really happen till recently. Think I can put that down to what’s happening in the world though. Worst thing I’ve had said to me was from my ex, just said that I’m now classed as disabled so I can get disability pay πŸ€¦πŸ»β€β™€οΈπŸ˜‚.

I don’t see my MS as a curse or hindrance but that’s me, I’ve done more in my life in a short space of time since my diagnosis than I probably would have before 😊.


hannah_clayson
1 month ago

I completely get where you’re coming from, I found myself constantly repeating myself and whatever I was saying falling on deaf ears, so I decided to write down what it is and how if affects me etc and share it on Facebook for people to look at at their leisure. I found this helped a lot. MS is a very complex illness which confuses me at times, so I by no means expect others to understand what it is that I’m/we are going through. There’s only so much you can do; explain to people how it affects YOU, send them a few links etc to have a look through, too.

Whilst few and far between, I still get these attitudes from people, or maybe I have just become more resilient to it over the years in my approach on how to respond/inform people.

Like @chezy17 said – I don’t see my MS as a curse or hindrance and am certainly doing a hell of a lot more with my life post MS diagnosis.


Anonymous
1 month ago

Ha ha the other day I pulled into a disabled car parking spot as I have a blue badge got out car walked round got all my 3 kids out car and a bloke next to us gave me such a mucky look , were not ment to have a family and walk a few metres oh and only be 38 as he was just old i think πŸ˜€ thats my issue I worrie to much about what others think I wish hed of said something to me x


desn
1 month ago

@chezy17 i totally agree… I cert dont see it as a curse im actually quite proud of myself and my ability to get on with things.. I guess you just kinda hget to see a different side of people when their attitudes to things like MS are exposed… quite entertaining at times πŸ˜‚πŸ˜‚πŸ˜‚


desn
1 month ago

@adele_barrow….. how dare you have a blue badge and be able to cover ten whole steps! πŸ˜‚πŸ˜‚πŸ˜‚ I mean…….. think some times you just have to laugh and let people have their opinions…


chezy17
1 month ago

That’s all you can do, get in with things. I think it definately shows you people’s true colours but that’s on them not us. πŸ˜‚πŸ˜‚


desn
1 month ago

chezy17 totally just use it for amusement πŸ˜‚


ray_thomas
1 month ago

Little or no understanding from work colleagues
my Boss said to me ..his exact words ” at least you can use the invalid toilet now ”
not withstanding that I have run 7 half marathons and run 10k Daily

I’m fitter than him !


kathie_griffiths
1 month ago

I’m 71 but only had diagnosis 2.5 yrs. Now have explanation for so much over my life! Seemingly now know it was MS way back in 1975,( I am extremely lucky) so at 71 when I talk about exhaustion, Yes, well we all get that at our age. And everyone’s shattered after seeing grandchildren. Know one friend thinks I’m milking it cos I’m never around, cos,” we’re all feeling like that at our age!”

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