Insensitivity
- While I was going through a relapse & needed to IV treatment, my boss (not immediate one but a step up) says to me, "You should schedule this stuff around allowed time off." LOL...seriously?! And..my mother: "If you would take vitamins..or if you ate better...you wouldn't have relapses." What??! Ugh... and finally the ex: "You are always using MS fatigue as an excuse to get out of things." For real??!
- —Guest Jessica
MY DUMB FRIEND!
- I have a friend who knows I have MS. she says get off the pills and work through the pain! Then, since I can't take the heat outside, I got a exercise trampoline, I pace myself, not jumping just kind of a bounce without lifting my feet off it! I know I need some sort of exercise and I enjoy this, she says "take it back or don't complain to me about your pain!" That is on thing I DON'T do is complain, but when the tic-delaroux hits, my eyes look like their bulging, my mouth pulls and I seem to put my toung on my top teeth to prevent cuts I must say I do look strange, but my son asked me if I was "tweeking" on speed! No one seems to understand! I am on disability,because I never know from one day to the next if I can function! I have even gotten to the point that i think I've got a hold on a glass, and it slips right out of my hands!
- —shmarie
Why do they say things like this?
- I was divorced, but still on good terms with my ex-in-laws when I was diagnosed. When I called my mother-in-law and told her I'd found out what was wrong, she said "Oh, no, my sister had that and went blind!" Since I'd been her daughter-in-law for over 20 years, I knew all her sisters and she didn't have a blind one I asked her which one and when she told me, I said "but she's not blind!" and was told that it only lasted 2 days. Gee, thanks for sharing that... Made me feel so much better.
- —Guest Mary
family
- My daughter was diagnosed at 20 with Multiple Sclerosis. My sister took every opportunity to tell me that the MS symptoms displayed by her neighbor were the "real" ones. Anything else, including what my daughter was dealing with was of no comparable importance. No problem...with that attitude....no contact. I am far better off and so is my daughter.
- —Guest gioia
The new Boyfriend
- We have known each other for 8 yrs. He has chased me for 6yrs. I finally gave hime a chance. Everything is wonderful, until one night I am tired. I pulled 12 hrs. at the hospital for the second day and have another one to go. All are away at friends and my mom. I am thinking alone time for me, onlty me. I tell him what kind of mood I am in and that I need me time tonight. It has been non stop for 2 months since we have been dating. I need a stress break. So, he says So, now its day by day with you. WOW!! My response was not nice. But I did say well duh I told him my body controls me I dont control my body. Everyday single day I have to see what it feels like doing. Pissed me off. That is why I rather not date
- —bailey7976
EX boyfriend
- Before I was dx. The ex used to call me bipolar because of all the random mood swings I was having. After dx. He still called me bipolar but then one day said that I was faking having M.S. so that I can get attention. This is even seeing the lesions on my brain. What I think it was he wanted the attention. So, I had to tell him to kick rocks!!!!!!
- —bailey7976
My own mother
- I was really shocked when my own mother said she didnt think "just having MS" would help me get SSDI. I didnt get mad or anything, I was just so shocked! She sees my daily struggles with MS.
- —vicki102957
Not worth my breath to respond
- I was at Wal-Mart, and as all of Ms sufferer's we have our balance issues. Well I had an issue of balance on this particular day. A lady came up to me and accused me of being drunk, and that you drunk's need to stay home. Wouldn't you think I would smell like a brewery? Maybe she was smelling herself. Huh! an accusing me.
- —Guest Lizard
You look great!
- I have had so many ridiculous statements thrown at me. I have been thru the :"You look great sitting there" and have also encountered many elderly people yelling at me for parking in handicapped spots. I usually just say to them, "well if you are going to complain, give me more time & you can watch me try to walk to the back of my car & get my scooter out!!" People have no clue whatsoever what we MS'ers go thru on a day to day basis. Just because we don't "LOOK" sick, doesn't mean we are well. What really gets my goat is when I see people who are completely healthy, slamming the car door & literally running into the store w/ heels on, while I struggle from a non handicapped spot! Anyway most people have no clu this is in our brain, not our legs, it just AFFECTS our legs & arms & other nerve related muscular activity. SOme comments I have just read are unbelievable, esp the ones made by doctors!
- —Guest Ree*
sure enough
- I friend who knew about my MS asked me how my vision was doing. I told her that it was getting worse again. Her reply was "are you sure?" yeh, pretty sure....
- —Guest chattycathy
This from a neurologist
- I was dxd a little over a year ago and I am 56. Have had symptoms for over 10 years. My neurologist and his nurse informed me how lucky I was I didn't get it sooner. Lucky compared to what?? I now have a new neurologist that I like. Thank you Julie.
- —lmrt53
Thanks
- I am so glad for this opportunity to speak out. I was told by an MS group that MS was RARELY painful and did NOT shorten ones' life span! Since I was and am experiencing a lot of pain, I was flabbergasted! These grooups try to protect newly dignosed MS victims from the truth and in doing so are doing a terrible disservice to the MS community!
- —Guest Murphy
Murphy
- I have heard many, many, many dumb remarks! One was well you'll be OK. You just may need a cane now and then. Another favorite of mine: I was once asked why my arms and legs weren't all twisted up, and how it was that I could still walk?
- —Guest Murphy
Don't Tell !
- Zora Neale Hurston says,"You have to go there to know there." My experiences with especially my sister has cemented my feeling that people don't want to know because it is a burden for them. At work, if you tell, then it may be assumed that you want special considerations. MS is my (your)burden. Just do whatever it takes for you to function, and ignore any comments. You have to be strong and 'Endeavor to Persevere'.
- —InletGirl
Doctor Who?
- Upon finding out that I had been diagnosed with MS my daughter's pediatrician first asked "Are you sure that you have MS?", "Did you get a second opinion?", and when I told it was a "fure sure diagnosis she said "Well, MS really just tends to be more of an annoyence than anything else for people."... I didn't know how to respond without blowing up at her, so I didn't say anything, but that was the last visit to that pediatrician. I don't need to take my child to a doctor that thinks that MS is just an "annoyance more than anything" for people.... I never expected such an ignorant comment from a Doctor.
- —Guest Sandra
