Multiple Sclerosis (MS) Support Group

This community is a place where members can discuss current events and weigh in on what's going on in the world.

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malinaC505 03/03/2013

nobody around me except the people i'm really close with know i have ms, so i get to hear people's truly honest opinions about people with diseases like ms, and wooooow it's pathetic and uninformed.

i think that disabled (meaning in any way) people are thought about and treated so incorrectly. I have a friend who has spina bifida and people talk to him like he's mentally challenged sometimes - he's in college...i think he's ok.

the way people who have diseases like ms are viewed by everyone else really hurts me to hear, because it's like people are being written a fate that may not even exist for them, or doesn't even pertain to their disease.

you're either a 'true hero for being so brave' or a 'really sad story' once a label like ms exists - not just a person who's trying their best to live well given their current circumstances.

i think part of the reason support groups are so helpful is that since we all have the same disease, it's easier to see the other members as regular people, not just for some unfortunate bodily malfunction

it's just so frustrating hearing what people say sometimes.

almairis 03/03/2013

Hi

My pet peeve...just diabetes and high blood pressure. I don't have those yet I know having that combo its like seating on a grenade.

Its difficult to say anything politically correct even when we have the same illness. Ive mentioned to some how skinny they are,,, dropped foot,,, equipment,,, the problem is one never knows what that individual is sensitive to that second of the day. Ive noticed its better to smile and nod, and im sure someone goes away thinking im uncaring or uninvolved or God knows what.

Very difficult to always please everyone.

deleted_user 03/03/2013

i've started to dread it when people ask me what's wrong, when they find out i can't walk, have to take certain medicine, etc. because when i say MS, people don't have any idea what i mean. so they make up something.

chicagogrl 03/03/2013

How cool to be a fly on the wall... I would love to be in that position...or maybe not. I never notice, but my husband has told me people give us really shitty looks when we use my placard and park in the handicapped spot. Why? Because I'm not 90 years old or in a wheelchair? I never really notice because I don't give a shit about what some ignorant ass thinks.

Thanks for sharing your perspective. I hope you post more. It's very interesting.

Best wishes!

ezone 03/03/2013

I tell everyone like the people wking on my computer at Best Buy and it gets me nowhere. Then, when I tell other people, they are scared to get to know me like I am going to depend on them. People are so scared of us and all disabled people. My stepmother was disabled and my siblings were so unsympathic. The same way they are to me. People are selfish.

princessgwenda 03/03/2013

People are the worst.

Like how your closest friends start saying things to you about how "...but you don't look sick to me, you are NOT like my poor grandmother who uses a cane!! Lets walk the next 5 miles instead of payin for a cab to get us closer to the mall, unless you are going to be the big spender misscheapy......"

It's also pretty hurtful when other MSers say things to you like

"Ohh, MS is not what you have! People ONLY get MS after they are 50 years old, possibbly 40; you must have heard the Dr. wrong, or are watching too many movies/ tv... It doesn't happen to ANYONE who is in high school. Unless you are just a very very sick in the mind individual who likes to make fun of truely sick people..."

The only ones who can truely love us and NOT judge us with missinformation are our pets!

baywatchkelly 03/04/2013

I don't worry or take it personal anymore. I don't have pity party's much these days. I try to educate people when they ask. I never knew much about MS before either. I can't control if it makes people uncomfortable and frankly if they are that is ok. All disease stink. And although someone may not understand what MS'ers go through, I may not get what they suffer either. I try to remember that what they go through seems big to them and not compare it to what I go through. I also try to find common ground. All people who have disease suffer. I refuse to let others pity me.

hmmmingbird 03/04/2013

It sounds like all of you are hanging with the wrong crowd. Sorry, I don't mean to sound harsh.

My family - parents, siblings, children, neices and nephews - don't treat me any differently and have never said anything inapropriate.

The friends that I've told - and it gets to be more and more as my symptoms get more visible - are both empathetic and supportive.

And like catsr said, a lot of people don't what MS is. I didn't know until I was dxd. even though I knew that Annette Funicello had it and was in a wheelchair, and Montel Williams had no visible symptoms of which I was aware. Still, I never looked it up until it hit close to home.

deleted_user 03/04/2013

someone who is aware i have ms suggested that it would be good for me if i got in a outdoor pool in the front yard in the summer and also that getting into a jacuzzi would be good for me.

i found myself speechless.

koda1 03/04/2013

My biggest thing that really pisses me is........I know im not alone in this....
"BUT YOU LOOK SO WELL"......... I could scream....I dont of course
but some days come close.....
ARRRRRRrrrrrrrr

Orsova 03/04/2013

I think I have been through it all - from 'you look so well' to 'are you over your MS yet?' and the parking thing, and the not divulging my condition....but lately I have been doing a rethink - why shouldn't I tell people (if it is relevant to the conversation) and why shouldn't I think like gay people (LOUD AND PROUD!!!!!) If they don't get it it is not my problem...and if I can educate one person then it's worth it.

All this came about when I saw one of our well known comedians on a current affairs panel. Tim Ferguson has MS and is a great advocate not only for MS but also for people with disabilities in the work place.

Here's a link if you'd like to read more

http://www.theage.com.au/entertainment/comedy/in-the-face-of-adversity-20120316-1v9xr.html

AusSue 03/05/2013

I have a different annoyance "your such an inspiration the way you keep going with all your health issues & don't complain" also the you look so well etc. When they say that now I just say "you either laugh or cry & people like the laughing person " or similar. It really frustrates me as they don't have a clue of the battle it can be just to get up & dressed.

baywatchkelly 03/05/2013

I think we have all run into situations like these, but truly people just don't know what it is like or what symptoms we have. They usually are not being insensitive by saying we look good. They don't know heat can make us worse because it usually helps muscles that are tight. There is an opportunity to extend grace to those around us and educate them about MS. We can't control them or MS, however we can choose to not be offended at their lack of knowledge.

malinaC505 03/05/2013

for me, it's not so much lack of knowledge as it is judging a person's character by the fact that they have a disease.

this is kind of a bad example, but i got waaaay too drunk one night and threw up everywhere. obviously the next day, i felt like death was upon me. the next day one friend who knew i had ms jumped to the conclusion that i felt horrible because of ms, and was being way over sympathetic. when I explained that it was just because i drank about a half a bottle of vodka, she got really embarrased for jumping to conclusions.

deleted_user 03/05/2013

You're so insightful the things you say about how you view others and their uninformed, ignorant comments.

I sometimes say to myself, "She/He just doesn't know how I feel!" (When I'm thinking about how my fiance, mother, father didn't react how I wanted them to about an aspect of my disease I shared...then I think, "Well THANK GOD She/He doesn't know how I feel because that would mean they had MS too!"

I agree with you about the support groups though. I was on DS a couple of years back and I just joined again. People with MS...they know how MS is...You don't know how awful MS is until you have MS....it's the truth.

baywatchkelly 03/06/2013

I also refuse to let the world tell me who I am and define that by my disease. I see me for who I am, not for who others think I am. When I first had problems with mobility I would let peoples reactions bother me more. Now who cares is what I say. I am so much more than this disease. And so are ALL of you. We have gifts to offer the world. And if I inspire someone to live beyond their circumstances I count that a blessing. This change in how I view myself has increased the peace and joy I experience daily. And even if I am uncomfortable with a look someone gives, it isn't about me, it is more a reflection of them. Our lives are difficult enough without worrying about others.

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