Spoke to the mum of one of my son’s friends today and had to explain my situation to her as, of course, my son hadn’t passed the news on. Anyway, was surprised at how much I had to explain to her as she is a nurse! It seems that so little is known about MS, even by people in the medical
You are right about the professionals not even knowing. I recently had to tell work about my condition as it has got slightly worse and I am constantly tired not just tired but ms tired, requiring me to ask for a few rota changes to ensure I get proper rest time. Anyway I rang occupational health as well and the last thing they said to me was when you come to see us please bring all information on your condition as we don’t really know enough about ms.
Getting back to well people not understanding everyday this week my good friend and I have met for coffee I swear if he mentions one more time that he is tired the coffee will be going round his head. He knows about my condition but doesn’t fully understand. Guess it’s back to coffee next week I just hope he doesn’t mention being tired lol.
Hi Poll, no I don’t think people do understand, but then I don’t think this is specific to ms, it just applies to anything they don’t understand. My friend has cystic fibrosis, she looks well and carries on as normal but I don’t think she is very well, I don’t understand the ins and outs of all her treatment and I guess it is the same ŵith ms or any other condition.
People just hear ms and if they know someone with it then they just make a comparison to what they do know.
As for the professionals not knowing the ms speciaflised nurse (not the usual one but still an ms speciaflised nurse asked me what zanaflex was when it mentioned that it made me sleepy!
It's nice when people at try to show an interest and ask a question or two!
Trouble is (or one of them, anyway) that when you answer the person's question, however carefully, the person often just has no mental clothes hooks on which to hang that information, so it just falls straight onto the mental floor in a heap, so to speak. I think something like that is going on when people ask the same thing over and over again. They are trying to be interested, but they just don't have enough basic knowledge to make sense of anythign you tell them.
It's a good think we all have the patience of Job!
Poll, I get that all the time and am sick of trying to explain what ms is and how it affects everyone differently.
I think nobody understands ms because it doesnt come with steriotyping - like a pot on the leg and crutches. Variation makes for a very hard disease to understand. Oddly there is always someone saying: oh I know someone and shes not like you grrrr.
Frustration disease without all this I know too. perhaps we need badges.
I have problems with my osteo too, people think Im capable of lifting heavy weights when Im not, feel like telling them; IVE GOT BRITTLE BONES - GET IT!!! Im no way going to break my back again lifting anything for anyone. Boy does it get my heckles up.
i recently got from an old friend: why dont you walk, and why are you so tired all the time grrrrr. Ive given him leaflets on fatigue, leaflets on ms in general and yet he still doesnt understand. Hes even said: are you having me on? He sees me more mobile than other times, somtimes with my stick, then on my scooter. Feel like saying Ive got something else he might understand, making it easier on him - not me.
Frustration rules Poll, we are meant to be bugged by ignorance until we are given recognition by all and allowed to get on with our lives without being picked on for having a disease hardly anyone understands.
I certainly wouldn’t bother explaining it to people who are bored - assuming that’s what you meant.
I think it’s worth explaining to people who are sincere, and genuinely trying to understand, but not to those who glaze over, because they don’t really want to hear it.
How much do people really need to know? Unless they’re of a particularly scientific bent, they probably don’t need to know what’s going on, medically, to cause it. They probably just need to know how it affects you. “I have an hereditary condition that causes paralysis”, or “I have an hereditary condition that damages my nervous system” is probably enough. I realise you are not on firm ground, even with that, given the question marks over your diagnosis. So maybe just stick to: “I have a degenerative neurological condition”. That seems to cover most alternatives, without being too specific.
Hi Tina, cheers for your reply…helpful and caring as ever.
I guess when I said boredom I meant the way I am continually being tossed from MS to HSP and back again. Youre right, Ill say something on the lines of a neuro disorder. I just sometimes can`t find the patience to explain…and will others (not on this board) be bored with my story?
You’re right, they might not want to know all the twists and turns of how you got where you are today. But I think it depends both on the person, and on their relationship to you.
Some people are naturally not very curious about anything; others want to know all the gory details.
Friends have sort of an unwritten duty to humour our rants, even if they’re not that interested, don’t they?
As an aside, my mother asked for at least the third time yesterday, what is the difference between MS and muscular dystrophy.
Me: “Other than them being two completely different diseases, but both two words beginning with ‘M’?”
“Yes, but muscular dystrophy is a muscle thing, too, isn’t it?”
Me: “I think muscular dystrophy is a disease you’re born with, but I don’t know very much about it, because it’s not the disease I have. Anyway, MS isn’t a ‘muscle thing’, really. It’s a brain disease. The muscle problems are secondary.”
Dunno how many times I’m going to have to explain this stuff. She seems to think any illness that affects people’s mobility is basically the same. I don’t know how to answer: “What’s the difference?”, because I don’t understand why she’s comparing the two in the first place. It’s a bit like asking: “What’s the difference between apples and oranges?”
Hi again Poll, referring to the last few replies between you and Tina I think some people are genuinely interested and some aren’t. A man I had worked with the last 17 years recently asked me something about my ms, since it was just me and him in the office (everyone else was off) I told him the whole story , since this spanned 20 or so years it took a considerable length of time and we got no work done, lol, but if there had been anyone else in the office I probably wouldn’t have bothered with the whole story since they would probably have been less interested.