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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Kayce1970 05/14/2013

I was answering someone's post & it brought out allot of feelings.

I remember yrs ago when I was still walking & trying to live a "normal" life I remember the things people said to me.
It was soooo hurtful

Things like.......
You look healthy there can be nothing wrong....... Just pick up your socks. .....You are making a bigger deal out nothing......
Even from my doc he said you look great I am glad you are feeling better.....it's mind over matter......If you just do it and stop being lazy...

I used to think people where crazy how can not see it.

so I thought we could share here what did you hear from others who did not understand what was going on

jelinek121 05/14/2013

My problem is the one with the negative comments is me. I am my own worst critic. I have to tell myself it is okay to stay in bed to 8:30 on a weekend day. The world will not fall apart.

I am sorry for anything someone has said to anyone that is negative. I think I liked my BiLs comment the best, he wanted to know if MS was catching. When I said, No. He asked why was it a big deal that he know about it then. It helped put it in perspective.

Good luck,

deleted_user 05/14/2013

I hate when people say they know someone with MS, and they are doing OK. I'm glad for that person, but I'm not OK. We most likely don't have the same type(Me: SPMS. The person: Likely RRMS that has been/is being treated), and are symptoms are not the same, nor is the frequency or severity. It's like what I'm going through is being questioned, and that is hurtful.

There's also the cases where someone who DOESN'T know you have MS saying something that hurts you. There's no harm meant, but still hurts. Especially if my mind is off MS, which is rare. It just reminds me when I'm having a moment of freedom from it. This happened the other day. At work, I draw blood from animals (Believe me, a person would not want me to. I'm pretty shaky, nowadays.). The person holding a dog while I drew blood jokingly asked, "Forget your shaky pills?" I went from concentrating on my task to hidden gloom in a split second.

BlueIndy 05/15/2013

My mom looked at me the other day and said " you know Lor, you don't look sick".

I replied " you didn't look sick when you had cancer either".

I know it was kind of rude but geez! Mom! It's so hard when your closest family doubts you :(

Anne8 05/15/2013

People can be really dumb and insensitive. . .

deleted_user 05/15/2013

I really hate the statement, "It's just mind over matter". Really drives me crazy. It's like, believe me, if it was that simple, I would NEVER feel like this!

baywatchkelly 05/15/2013

Often our perception colors how we see things or if we get offended. I never mind when someone says I look good. A compliment is just that. I don't need everyone to know how bad I am feeling when they tell me I look good. Life is hard enough without getting offended with clueless people. A lot of people don't even know what MS is. I look at things positively and use circumstances to educate people about MS. I can focus on how crappy this is and what I have lost, or I can focus on what I can still do. MS might be trying to beat me physically, but I refuse to let it take my joy

deleted_user 05/15/2013

I had a very big business man that I have known for 20+ years tell me at church on christmas that "well you made it another year". I didn'ot know what to say . It was sort of shocking, the ignorance and stuff. I still like him , he is just a dumb ass obviousley. People are funny.

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