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.
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.
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.
People are ignorant... I pray for the people that feel a need to look at me funny, or question me.... Especially when parking in the handicapped spot...
I don't mind telling people I have MS... I simply say: that's the hand I was dealt.. Now it is my choice how I play it....
I have learned a lot through having MS, 7 spine surgeries, a total knee replacement and 5 weeks ago a Gastric Bypass.... If I can use what I have gone through to help another person it was all worth it.... Maybe that is the job that God gave me in life...
This is how I feel about it...
http://thegutsygeneration.tumblr.com/post/45421545075/when-a-healthy-person-tries-to-give-me-advice-about-my
That would be like telling her that if she stopped taking her medications for 7 days, she would be able to run. I can't sleep because I have plagues on the brain that do not allow me to sleep without medications. If I were denied them, I would stay awake until I died. I do not produce any melatonin. I never get sleepy on my own. NEVER. Why can't some people understand people have symptoms that are MS? I don't question people's pain symptoms so why do they question my sleep issues?
GRRRRR!!
Since everyone is sharing their stories...........I had one relative ask how I was doing because someone they knew that got MS was in a wheel chair after only a year! Another relative asked me how I was doing and let me know that a friend they knew had MS and died after just a couple years! The final relative informed me when I was first being diagnosed and still in shock that I must have thought myself into having MS and would have to think differently to think my way out of it. These are all educated people who haven't the slightest bit of ill intent. It is interesting to me that people can seem so put together and strong until faced with a traumatic situation and just become so ignorant. Unless someone has faced truly difficult circumstances, they just seem to come up short in depth and understanding at times. Such is life......
My friends and family are very supportive, but they tend to go over board in trying to help me. My Dad goes out of his way to make my favorite foods when I visit on Sundays.
My husband tries to be supportive but at times becomes very discouraging. He thinks his way to cre for me is the BEST AND ONLY WAY,,
'Speak your mind. Those who mind don't matter and those who matter, don't mind.'
I find that whether or not I tell them I have MS, they are going to know something isn't quite right with me. And everyone is going to act differently.
My grandfather just turned 84... and the other day while with him and my mother...in the middle of joking about that silly geico commercial "I have a flat tire!!" I completely forgot what we were talking about and had to ask in order to figure out what he was referring to. And he started telling mom in front of me that I was faking it, and my mom began telling him that I really wasn't, and that my cognitive function was really getting bad. But they sat there talking about me as if I wasn't sitting there 5 feet from them.
I have found that when it comes to invisible symptoms... People are going to believe whatever they want and act accordly.