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Nope, Sorry!

I learn a lot of things about my MS daily. And by that, I mean I’m told by people what they think could have caused my MS. In other words, a lot of unsolicited opinions are given (insert eye roll here). The other day I learned from someone, whom I had just met, that artificial sweeteners caused my MS.

Actually, it went like this: “You don’t drink anything with artificial sweeteners, do you? Because I heard that can cause MS.”

All I could think was, “Wow.”

Things you shouldn’t say to people with MS

The audacity of some people. Nope, sorry, I don’t want to hear that, nor do I believe that. Things like this definitely fall under the category of things you shouldn’t say to people with MS. The truth is unless you have MS yourself, you’re a known MS expert, or you’re my doctor, then I have no desire to hear your opinion on what caused my MS! I especially don’t want your opinion if it’s an unproven fact. Honestly, I’ve had MS for almost 15 years now, so it’s a little late for your thoughts on what caused it.

Oh, are you an expert now?

It seems like people do these kinds of things often. They have a friend with MS or saw someone on TV with MS, so they’re now experts. I think what gets to me most is that when and if I tell someone that I have MS, I always tell them when I was diagnosed. For those who don’t know, that was in 2004. So, I find it funny that despite knowing that, people still like to tell me what they’ve heard in regards to MS. I honestly do appreciate their concern, but I don’t appreciate them telling me myths I’ve already read about. As someone who’s had MS for over a decade, I stay in the loop when it comes to anything about multiple sclerosis. I like to stay informed and up to date on anything new. Not to be rude, but if you want to tell me something that your best friend’s, sister’s uncle told you about MS then I just really don’t want to hear it. It’s not just people sharing what they’ve heard that causes MS either, it’s people telling me what can magically rid me of MS. People, PLEASE!

Power juice isn’t going to cure my MS

For example, another one I got recently was how juicing could cure me (insert second eye roll). I’m sorry to tell you, there is no miraculous cure. Believe me, I’ve done my research. And while I’m all for doing things to help alter my symptoms and make me feel my best, I don’t believe anything will just erase what I’ve dealt with for the past 15 years. Your power juice isn’t going to take my disease away. Telling someone with MS that something can cure them when you have no proof of this, and we know that it is untrue, is just cruel. Don’t do it!

A little more understanding would be nice

Don’t get me wrong, I enjoy learning new things that improve the way I’m feeling. I don’t always hate people talking to me about MS. I truly do learn something new daily, whether it’s a fact or not. And, I enjoy speaking to others with MS and learning what has helped them. However, I don’t want to be told myths, and I don’t want to be told that you’ve heard of some cure that helped your long lost friend. I also don’t want you to push what has helped someone you know onto me. There is no one thing helps all. MS is different for everyone. It would just be nice sometimes if everyone understood that.

XOXO,

Calie

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • lovmar
    3 months ago

    Oh I have had sooo many people tell me that if I just don’t eat/drink I wil be cured just like this guy they knew!! I also want people to stop sending me emails about how ms has been finally cured! Then everyone I have ever met sends me the link. Drives me nuts

  • Calie Wyatt moderator author
    3 months ago

    @lovmar I absolutely understand those frustrations!! Thank you so much for sharing!

    XOXO,

    Calie

  • MargaritaMaria
    3 months ago

    Thank you, Calie, for articulating this so well. My own family has never bothered to do any legitimate on MS or how it may be effecting me. YET, I have had various family members suggest special mushrooms (my brother met a guy who claimed he had been cured of his MS by these special mushrooms…oh, and now he was a distributor for their products). My niece suggested (because she heard….) I put my arm in a bee hive. Somewhere in there was a suggestion for blue algae. AND, of course I have had friends try to sell me products because they would cure MS. I find that particularly annoying. Anyone else want to exploit my MS for their own financial gain?

  • Calie Wyatt moderator author
    3 months ago

    @margaritamaria oh my goodness, yes! I hate it that we all have to deal with insensitive comments about what people think will “heal” us. It’s especially hard when it’s people we love. Thank you for sharing!

    Calie

  • Kokomom504
    3 months ago

    I have accepted that I have an uncurable disease, with no cause, but I am still MAD!
    I have no pain, but got exema anyway .

  • Calie Wyatt moderator author
    3 months ago

    @kokomom504 thank you for sharing your feelings! We definitely understand how mad and frustrating MS can be!

    Wishing you the best,

    Calie

  • Julie
    3 months ago

    I’ve been known to tell people “Oh wow! Let me give you my neurologists number. He needs to hear your fascinating theories!”

    Yeah, after nearly 2 decades of things like this, I no longer have the patience for it.

  • Calie Wyatt moderator author
    3 months ago

    @jlnewport things like this can really wear our patience thin! I love that you say “Let me give you my neurologists number”, maybe then they’ll actually think twice before trying to give silly advice! Thanks for sharing!!

    Calie

  • chong61
    3 months ago

    And you forgot to say “I can’t come to dinner because I have vertigo today” and one of your children says “wonder what caused that.” It is concern, just not an understanding. You can talk until you are blue and still they just don’t understand. I have had MS for 20 years and 20 years my children have never accepted the fact that I do have a disease that controls me every day and I have nothing that brings it on.

  • Calie Wyatt moderator author
    3 months ago

    @chong61 I agree, a lot of people do voice concern without understanding. I love the way you put that!! I do hope that one day people will be more understanding and accepting. Thank you for your comment!

    Calie

  • StephNA311
    3 months ago

    SNAP!!! Hahaha my thoughts exactly. Unless you have MS you cannot make a true fact full statement. I know I’ve had so many random things happen to me that I don’t know what to do in a good symptom free moment cause I know the next breath it might be gone. Yet still we hold our breath and as completely expected “BOOM!” or “TWITCH!” or “ELECTIC SPARK FEELING!” or… Etc. Lol way to many to list. it keeps life unexpected and surprising.

  • Calie Wyatt moderator author
    3 months ago

    @stephna311 I agree!! MS definitely keeps life unexpected and surprising! Thank you for sharing!

    Calie

  • gmc
    3 months ago

    I think the key is when you mentioned being up to date and informed. So many people take antidotal events (my aunt Sue was better after juicing) and generalize to the entire MS population. The scientific method is unheard of or is thrown out of the window whenever someone THINKS they have the answer. Stay smart.

  • Calie Wyatt moderator author
    3 months ago

    @glendahendry yes, absolutely! Thank you for your comment!

    Calie

  • Mike H
    3 months ago

    You’re right Callie. The “experts” need to learn to keep their trap shut. As you say, we’ve heard it all. If someone wasn’t dx’d with it then they really don’t know what it’s all about…Mike

  • Shelby Comito moderator
    3 months ago

    We hear you, @mikeh. And though I think it comes from a place of wanting to help, it definitely has the exact opposite result. What are some of the “best ones” you’ve gotten??
    – Shelby, MultipleSclerosis.net Team Member

  • Tammy1
    3 months ago

    I have MS I was diagnosed 5 years ago. No meds helped. Went back to doctors because im miserable. I was sent to swedish medical. They said since my lesions had not changed with meds they were not sure it was M.S. actually called me patient X. With no follow through. Now Im told after going down hill and feeling worse. No memory no energy, no strength, I can’t walk a straight line. I fall alot. I’ve had seizures, I can barely remember last night let alone yesterday. I’ve lost 60 pounds in a matter of months because my body won’t let me eat. Im drinking ensure to stay alive. Now im told to start all over again while on no meds which I haven’t had since the MS shots didn’t help. My GP doctors won’t give me any meds even for symptoms because in his words he didn’t want to step on any doctors toes that could help. Gave me a referral for another neurologist. And another for neuro opthomolgist. Which when he tried to look up in the computer and couldnt find that kind of doctor. So that’s left to me to find. I feel like all the doctors just keep pushing me somewhere else and nobody does anything. Im falling between the cracks even with all my rants and complaints. I don’t have a life. I barely leave my room. Im suffering alone and the doctors don’t want to help me. They all agree something is wrong but would rather call me patient X than help me out. I think it’s going to kill me sooner rather than later. I haven’t meant my new son in law or my grandson who is 8 months old because I have trouble traveling alone. If you have any recommendations I could surely use it

  • Donna Steigleder moderator
    3 months ago

    Tammy, It sounds like you may live in Sweden? I’m not familiar with Swedish medical practices but if you can seek a second opinion, I would recommend doing so. At the very least, someone should be treating your symptoms. Have you considered changing your primary care doctor if he won’t treat your symptoms?

  • Kristie-Lee
    3 months ago

    I too have been given a lot of unsolicited ‘medical’ advice on what to do to ‘cure’ my ms.
    One instance that I always keep in mind is the neighbor lady that tried to sell me some special juice that could reverse the disease and take away all my symptoms… about a year later, that same lady called me for advice because she was diagnosed with ms. It was all I could do to not ask her if she wasnt taking her ‘juice’. ‍♀️

  • Lupe
    3 months ago

    Karma at its best! Knowing myself, that is exactly what I would have told her, “Did you try taking your juice? Let me know how that works.”

  • Shelby Comito moderator
    3 months ago

    Hahah!! How ironic @kristie-lee. Thank you for sharing! Best, Shelby, MultipleSclerosis.net Team Member

  • Donna Steigleder moderator
    3 months ago

    Touche`

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