Tie One on for Multiple Sclerosis
As many of you know we run a Facebook page called MultipleSclerosisTalk. If you are not a member you can join by clicking here.
Members of the group use it for all kinds of things. To ask questions, share information and experiences but also to vent.
This could be because of the therapy they are using or just because of the effect of the symptoms of multiple sclerosis on their lives. But sometimes it is because of the things they are told. Firstly by the things they are told by the people around them. Donnee Spencer’s infographic “I don’t look sick“ has rightly become an internet legend.
But, sadly, it can also be things that healthcare professionals have said to them.
A few days ago one of our readers mentioned that she had been told that “Multiple Sclerosis does not cause pain”. Which would come as news to everyone in the MS community I’d have thought.
Now it occurred to me that there are loads of these kinds of myths (ie total rubbish) doing the rounds. The purpose of this blog is to give our readers the opportunity to share the myths about MS (and pain) they hate the most.
It should also give us a list of things to share with people who have just been diagnosed with multiple sclerosis.
So it would be great if you could use the comments box below to share the things that have been said to you about multiple sclerosis which irritate you the most.
| paxtonfan | Jamie OConnor staceysnowdrop Wasn’t Stacey just giving an example of things people say that are annoying? |
| paxtonfan | devsmum MarciaMarie I think she was posting that as one of those examples of what people say that is annoying. |
| JenniferVillegas | But have you tried (something ridiculous)? That could help get rid of it. |
| KimPriebe | You will be in a wheelchair soon!!! |
| Hbonn1 | Yeah, I have a friend with ME… Or I’m surprised they let you have children! |
| KristinaElizabethShepard | “you can’t tell me you were in 10/10 pain yesterday and none today” |
| Tcarr4151976 | “I had a 2nd cousin’s sister’s boyfriend’s hairdresser who cured MS by thinking hard about it not affecting him” |
| Tcarr4151976 | “I know just how you feel, I am tired all the time too” |
| ShellyTomac | You are just a lazy ass and need to get a job!!! |
| AmberKellamBrodie | “You don’t appreciate life, and you just need to try harder”. My mother in law said that to me 3 days ago. I have PPMS and have had it for quite a while. Somedays I need a cane, some days my walker. Nevertheless, I can’t do anything that requires a great deal of walking. The power in my legs just goes away. |
| LoriBatchelor | Gee, that looks like fun!–referring to my mobility scooter! |
| SUZCAM | But you look so well |
| tstokes | I am not sure who is worse Ann Romney or Dr. Wahl. Remission? or curing your MS with diet? |
| Kellyhennigan | If you stay in the heat more you’ll just get used to it and won’t have any more side affects. |
| DD_UK | are you drunk? – I fall a lot, and my sense of balance is shot |
| karenmckinna | people keep telling me that im probably tired because I sleep too much – 8 hrs a night Mon-Thurs & 10 ish a night Fri – Sun. |
| SherrieGoldberg | I always get “you look fine” or “everyone has problems. I get migraines” |
| challengeme | People don’t understand that the disease is different in everyone, and everyone is different. So not everyone will have the same issues. |
| BeckySenette | “I have restless leg syndrome so I totally understand what you’re going through” |
| DanaSeatonLopez | You look just fine or isn’t that what Jerry Lewis raises money for? |
| AricaDavis | If you’d just sleep more you’d be fine |
| Jamie OConnor | staceysnowdrop no! It’s an autoimmune disease |
| devsmum | MarciaMarie this may not be the case for ever tho Marcia – depends on what type of MS they have, how long they have had it, and where the damage is. We are all affected quite differently…. this is something really important to understand. I got MS at 16 – but did not have walking difficulties until 36….. |
| MarciaMarie | I know someone with ms and they can walk just fine. |
| staceysnowdrop | Isn’t MS a form of arthritis? |
| DarlaWalker | that we all end up in a wheelchair |
| DarlaWalker | that we all end up in a wheelchair |
| Kelloggs1226 | I hate when people tell me that |
| Kelloggs1226 | If you just changed your diet you’d be fine |
| boumalicious | Oh, that’s like ME isn’t it? (get told that a lot!)
It’s infectious It’s hereditary |
Jamie OConnor staceysnowdrop Wasn’t Stacey just giving an example of things people say that are annoying?
devsmum MarciaMarie I think she was posting that as one of those examples of what people say that is annoying.
But have you tried (something ridiculous)? That could help get rid of it.
You will be in a wheelchair soon!!!
Yeah, I have a friend with ME…
Or
I’m surprised they let you have children!
“you can’t tell me you were in 10/10 pain yesterday and none today”
“I had a 2nd cousin’s sister’s boyfriend’s hairdresser who cured MS by thinking hard about it not affecting him”
“I know just how you feel, I am tired all the time too”
You are just a lazy ass and need to get a job!!!
“You don’t appreciate life, and you just need to try harder”. My mother in law said that to me 3 days ago. I have PPMS and have had it for quite a while. Somedays I need a cane, some days my walker. Nevertheless, I can’t do anything that requires a great deal of walking. The power in my legs just goes away.
Gee, that looks like fun!–referring to my mobility scooter!
But you look so well
I am not sure who is worse Ann Romney or Dr. Wahl. Remission? or curing your MS with diet?
If you stay in the heat more you’ll just get used to it and won’t have any more side affects.
are you drunk? – I fall a lot, and my sense of balance is shot
people keep telling me that im probably tired because I sleep too much – 8 hrs a night Mon-Thurs & 10 ish a night Fri – Sun.
I always get “you look fine” or “everyone has problems. I get migraines”
People don’t understand that the disease is different in everyone, and everyone is different. So not everyone will have the same issues.
“I have restless leg syndrome so I totally understand what you’re going through”
You look just fine or isn’t that what Jerry Lewis raises money for?
If you’d just sleep more you’d be fine
staceysnowdrop no! It’s an autoimmune disease
MarciaMarie this may not be the case for ever tho Marcia – depends on what type of MS they have, how long they have had it, and where the damage is. We are all affected quite differently…. this is something really important to understand. I got MS at 16 – but did not have walking difficulties until 36…..
I know someone with ms and they can walk just fine.
Isn’t MS a form of arthritis?
that we all end up in a wheelchair
that we all end up in a wheelchair
I hate when people tell me that
If you just changed your diet you’d be fine
Oh, that’s like ME isn’t it? (get told that a lot!)
It’s infectious
It’s hereditary