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6 Things people should not say

Things not to say

“Take my advice…”

An MS diagnosis is usually the result of countless tests, doctor visits, and lots of personal research. Before offering advice, make sure what you have to say comes from a reliable source, is newsworthy, and most of all – wanted or needed.
Have you heard any of these reactions? View the original post by Ashley.

Comments

  • thewildeman2
    2 years ago

    “I know so and so who had cancer or part of their brain removed so you’re just lazy” is a particular fave of mine.
    “But you can type on a computer obviously” is another. Because anything I’m actually managing to do at any given moment means my MS somehow doesn’t exist.
    “But you’r getting around okay now.”
    UGH. I swear I’m going to do an article on snappy answers to stupid comments about MS or autism or any of it.

  • Jimmie
    2 years ago

    I have been coping with MS symptoms for over 40 years, if you don’t do it, you won’t be able to soon, Never quit, you can limit yourself, but never quit.

  • Jade1956
    3 years ago

    My mother’s favorite: If you would just concentrate, you would get over this foolishness. Shoulda seen her the day my neurologist took her aside and told her where the bear does his business in the buckwheat. She came out of that conversation white as a sheet, went to her lawyer, and rewrote her will. She left it all to me. With an apology for her insensitivity about a disease that in her lifetime had not really affected me much. I wasn’t wearing braces then and just had an annual flare up. I don’t know what the neurologist said to her, but I’m serious. It all happened in one day.

  • Tesla
    9 months ago

    Probably went through a litany of patient horrors, walking one day, diapers the next, or too blind to fix a cup of tea. Or maybe she just listens to white males with some letters behind their names…

  • gparado
    3 years ago

    OMG- Many of my friends told me 75% of these in the first week! I love them, and they mean well, but it got to be too much.

  • MNugent
    3 years ago

    Greetings all!
    A few of my favorites are:
    “You can sleep when you’re dead”
    “You blame everything on the M.S.”

  • dakota
    3 years ago

    If I had a nickel… I’d throw them at people who constantly say this to me. It’s my mom mostly, who, being a nurse AND having RA, would understand.

  • OH Rox
    4 years ago

    I am a brand new “baby”! Just diagnosed two weeks ago! After 20 years of not knowing what was wrong with me!!!! Yeay! Yeay! I have been taken aback by some people’s reactions… Good thing I am so excited to know what is finally wrong with me that I am throwing an “I have MS Party” …. I am asking my immediate family to research one thing about MS and be ready to share at the party! The price of admission for friends is a question! They must ask me a question about MS… And I am going to cook food that can help with my immune system! I figured, will be a great way to get the word out, involve my immediate family with research and provide information for my group of friends! And bring awareness all together! Any advice??? Please inbox me!!! Thank you!!!!

  • Kelly McNamara moderator
    4 years ago

    Hi OH Rox. Thanks for reaching out and for being a part of our community! Having a party sounds like a great idea! A few of our contributors have written articles with advice for people newly diagnosed: http://multiplesclerosis.net/living-with-ms/advice-for-newly-diagnosed-from-someone-who-cares/, http://multiplesclerosis.net/living-with-ms/5-pieces-of-advice-for-the-newly-diagnosed/, and http://multiplesclerosis.net/living-with-ms/dealing-with-ms-diagnosis/. Let us know how the party goes! Best, Kelly, Community Manager

  • Lin
    4 years ago

    I completely disagree with this post. For one, my doctor never ever told me anything about MS or that diet, exercise, stress reduction, vitamins had anything to do with MS. If it were not for the friends around me and the internet, I would not have the valuable information that I have. Over 70% of your immunity is in your digestive track. Diet ABSOLUTELY matters. Exercise matters, vitamins (D especially) matters. You should be thanking these people for caring enough to suggest ways to help, instead of being close-minded.

  • Mjvig3
    4 years ago

    How can you post a link to “natural remedies” in an article explaining how it is insensitive to make such recommendations? Hypocritical much?

  • dakota
    3 years ago

    It’s a little different when an MS website does it and when Dave from accounting who doesn’t know boo about MS does it

  • memgone
    4 years ago

    This one makes me want to scream! “Don’t worry about it. I forget too!” I appreciate the understanding statement, and everyone forgets at times, but not consistently every day. If I tell them I have MS and try to explain it, which I really can’t do well either, they say, “I thought people with MS couldn’t walk.” That’s a symptom that others can see. The cognitive and memory issues need to be “seen” and understood differently.

  • Maggie
    4 years ago

    I loved everyone’s comments here. In the 20 years since my diagnosis, I’ve heard it all. And then today a friend asked me if I ate gluten. Two weeks ago, another friend asked if I’ve ever tried lavender oil because “that’s a cure.” I wasn’t sure if I was supposed to drink it or apply it to my skin.

  • Livingston
    5 years ago

    How about, “Well, I get tired too.” Yeah? Sleep for 10 hours – then feel like you haven’t been to bed yet? Every day: Do I REALLY have to get up??? Looking at the calendar often – to remind me of what I have to do for the day… or else will completely forget. What did I do/eat/plan yesterday? I have NO idea!!! Have to check the calendar. Yes. Write EVERYTHING down. Lists everywhere….sigh. VERY frustrating. Take notes while on the phone with friends- so I’ll remember what they said!! Craziness. That leaden feeling – like I HAVE to close my eyes RIGHT NOW. NO choice….

  • Carol
    2 years ago

    I have to check the calendar quite often. I forget what day it is and hope that if I look at the calendar I might be able to figure out which day it is.

  • ThisBSMS
    5 years ago

    After I told my friend that I am having a really hard time (for over a month now I have been feeling pretty bad and was sick), she told me that MS is a lesson for me. “Let that be a lesson for you that you need to learn”. Wtf? A lesson? I told her I’ve been learning for over 8 years now, I think I’ve learned enough.” Why doesn’t she want to learn with me? Needless to say she didn’t show any compassion in that respect.

  • alchemie
    5 years ago

    I’ve heard the contagious one before. Crazy.

  • 5 years ago

    Well I just got back from a week long cruise with a “best” friend from high school. We have know each other since 9th grade and she does know I have MS. I’m so glad I found this site to vent since I can’t tell my wonderful husband what happened. If I told him it would break his heart to find out what really happened.

    Over all it was a great trip, except for these comments from my friend:

    “You are the slowest person I know.” I’m very happy none of her other friends have MS.

    “This is the fastest I’ve seen you walk all week” (That was after I told her she was wrong about where something was on the ship and oh yes I was correct. Not even a sorry after words to me.

    At dinner as we are walking to our table, yes it was hard walking for me all the time weather I looked like I was having a problem or not but I don’t need to tell you, she proceeds to take the closest seat to us for herself vs letting me sit down as soon as I could.

    I have never had the feeling of being a pathetic person with MS as I did with her this entire week. It really opened my eyes to how lucky I am for having a wonderful family and other friends that show their love with helpful support.

    Most of the time I don’t let things like this bother me but all this coming from a “Best Friend” was just too much for even me to handle. I should have expected this since a few times in the past when I really, really needed her she just wasn’t there for me.

    That helped, thank you.

  • Carol
    2 years ago

    I can’t believe all of her hurtful remarks. I certainly would have been ready to throw her overboard. I’m sorry that your week-long cruise was ruined by one of your “best friends.”

  • sue
    5 years ago

    I have two cousins with MS. I saw one about a year ago that I hadn’t seen in several years. I told her she was looking good. Her response, you know I have MS don’t you? Wow, what does one say to that? I can appreciate there are things they don’t want to hear but I didn’t think that was one of them.

  • Confused
    5 years ago

    My Mother has stated she has had MS for the last 25 years or so and has not regressed one bit!. Great I suppose, but is this normal for this to happen. I don’t think so, as unfortunately every time I see someone whom has been diagnosed, they are in terrible condition shortly after being diagnosed.

    I’m grateful that she has not showed the symptoms as severe as others, but I am afraid she is lying to us about the diagnosis just so she did not have to work. She claims she cannot work and cannot leave the house, but when were not around, the neighbors say she’s all over the place. .. Is this wrong of me to think this way? How can I confirm other than seeing the Doctor with her?

  • Wes
    5 years ago

    I went for about 8 years undiagnosed because of an incompetent neuro until I was finally ravaged to the point of total disability; a “friend” of mine, former friend now, stated that there are lots of people with MS who work every day. I worked, as I could while trying to find answers, but now am fighting the chair, and not very well.

  • Carol
    2 years ago

    MS affects everyone differently. I know some that can work and I know others that are in the chair.

  • Jen
    5 years ago

    What I always tell people 1st I ask them if they have ever had Mono? If yes I say now imagine feeling like that for the rest of your life. If they havent I tell them to think backto the sickest they have ever been ( to the point of bed ridden and no energy to barley make it to the restroom) times it by 10 and that is what MS is like for alot of us daily or under a bad attack. I hear ya tho it drives me crazy when people act like MS is a joke, not a big deal , etc just cause you dont look sick.

  • Kiran
    4 years ago

    I even had a teacher with MS who acted like this.. it was just an everyday thing. (I guess for her.. it really was/is – she had had it 13 year by this time) When I was first diagnosed she was like… ‘Ooo! I have that!’ =D and never gave me a break in class, or showed empathy, while i was having to deal with my new lifestyle. – She already knew what it took to deal with MS, the drugs, fatigue, injections, vertigo; I was scared… and was just learning.. =(

  • D'Arcy
    5 years ago

    Before I retired, my co-workers in our group, (and behind my back) accused me of ‘playing the system’ on sick leave and family leave. They really did not believe I had MS. When I called a meeting to explain what MS is and what it does, they didn’t want to hear any of it. They claimed they knew what it was. I felt very alone in my struggle and should of retired long before I did, even though I felt a loyalty to the company. I now know that no one really cared.

  • OddDuck
    5 years ago

    I love it when people say “if you didn’t take so much medication maybe you wouldn’t be so tired all the time. You know those pain killers can make you feel drowsy “. They have no idea that pain killers actually give me energy.

    The other is “people with Multiple Sclerosis are all a bunch of druggies smoking pot”. I don’t, I don’t like the way it makes me feel.

    And last

    “You chose your lifestyle. Now you’re paying for it.” Makes me want to slap someone up side the head. Exactly what lifestyle are they talking about? No drinking, no recreational drugs, caring, giving? I guess I did choose and you can see only a few of use are paying the price!

  • stanya
    6 years ago

    What a wonderful blog!
    I have heard all of these comments and suggestions.
    My favorites, “Why do you have to write everything down, can’t you remember???” Do I apologize/explain/educate
    or say “Thank you for your criticism, I write things down so that I can remember them, because I have MS”? and/or “Thank you and have a nice day” 🙂

  • turtle
    6 years ago

    When I was pregnant I wanted to see all of the doctors in the practice, just in case one of them ended up being there for the delivery. One of them asked me questions about my having MS, and what medications I was taking, etc. When I told him that I had chosen not to take any medications at this point, he said with a very condescending, sarcastic tone “Are you sure you even have MS?” What a jerk. Thank God MY ob was available when it was time to deliver : )

  • nora
    6 years ago

    I drag my feet when walking. Someone commented, “I think you could do a lot better”.
    REALLY???? I purposely drag my feet???
    People that do not have MS should refrain from making unsolicited comments about what it is like.

  • tamtam
    6 years ago

    After waking me with an early morning phone call to ask me about another person from church, my former pastor told me, “You sleep too much.” I said, “You try living with MS.” I tried more than once to educate him and others in the church about MS, but they weren’t really interested. One woman said that I just didn’t want to be healed badly enough. This is just one of the reasons why it’s a “former” church.

  • OddDuck
    5 years ago

    I’ve had people say the same thing to me. I tell them ” I very much believe that God is still in the healing business and I did consider asking for healing, however, look at all the years I’ve lived with this disease without knowing that I had it. I’ve lived through flare after flare through nothing but the grace and strength of my Lord. What a testimony He has given me to how wonderful He is and what more can He do through me as people watch me give Him the praise every day. Besides, God calls us all to something. Maybe He’s called me to this. What I suffer is minuscule to what Christ suffered for me. How can I refuse to suffer for my God as long as I give Him the glory for what I’m able to do each day?” Try some version of that, I mean it very much from my heart and people can tell. It usually leaves them speechless.

  • summer
    6 years ago

    I hate when people point out my tremors or slurred speech…. I try to hide it.. sometimes I can’t… and when I can’t… people say I’m low on iron and shaking because of it… or they think I’m drunk or high because I slur sometimes… but what I love the most… is when people think I’m avoiding them because I’m too tired after a 60 hour work week to even just hang out and watch t.v.

  • turtle
    6 years ago

    That’s one of my favorites too. My friends tell me all the time that I just go and go, so how could I be so tired if I’m going all the time (40+ hr work week; in college; 2 kids with all of their school and activities.) I try to explain to them that I go and go because the second I stop I fall asleep. Then they say, if you’re that tired, then just sleep. Yeah, like that will help :/ I could sleep for 40 hours straight and STILL be tired! They just do not understand.

  • MSinWA
    6 years ago

    I have cognitive issues and fatigue. I was discussing these with a woman I thought was a fairly close friend who knew very well I had MS:

    “Oh, you’re just getting older.”

    Talk about being invisible!

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