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Two men talking on the sidewalk and one is literally putting his foot in his mouth while the other is frowning.

What Not to Say to a Person with MS

People have the best intentions. They want to say something uplifting or profound to affect me in a positive way. They shouldn’t. It usually falls flat. I have lots of motivators in my life. Few of them are one or two-sentence clichés from friends, relatives, and acquaintances.

Let’s dive right in

“I know how you feel.”

No, you don’t.

The fact that you had a pinched nerve once, or the fact that you had a mysterious virus 10 years ago that doctors were never able to identify – neither of these qualify you to know how I feel. Even if you survived stage IV cancer or use a wheelchair because of a spinal cord injury, you still don’t know. The way that I feel is a product not only of my condition but of the entirety of my life experiences. Sure, you went through a lot, but you can’t possibly know how I feel.

I barely know how I feel.

“You look great.”

A. That’s probably a lie.

B. If I happen to look great, that in no way reflects upon how my disease is progressing, or how I feel. In fact, when I’m in a certain mood, if you tell me I look great, I may hear, “You can’t be as sick as you say you are.”

“You should try acupuncture, bee sting therapy, etc.”

People with MS are inundated with unsubstantiated treatment ideas. If you think you have learned about something medically sound, an acceptable approach might be: “You probably already know this, but did you read about such and such a treatment?” Be judicious, however, because you only get to do this once for each person you know with MS (my rule).

“Mind over matter”

Did I mention that MS is a brain disease?

“Things have a way of working out.”

That’s not a serious statement — maybe when it comes to middle school best friends arguing, but not when it comes to chronic diseases.

“If anyone can beat this, it’s you.”

It’s not a matter of effort or talent or will. This is an incurable disease. I might accommodate it, but I won’t beat it.

“I feel sorry for you.”

Such a statement is the last thing a person with a chronic disease needs to hear. Empathy, yes. Pity, no.

“I’m so upset about your condition.”

“Please accept my apology for what I’m putting you through.” Okay, that’s a little snarky. I’ll reserve that response for only the most egregious offenders.

“What doesn’t kill you makes you stronger.”

That might apply to certain infectious diseases, colds, and flues. My body is cannibalizing my central nervous system. My body is killing me, not making me stronger.

“Stay positive.”

Yeah, I’ll get right on that.

“You’ll find it helps if you just smile more.”

See above.

“I am praying for you.”

I struggle with this one. The sentiment is undoubtedly genuine, but religion isn’t as integrated into our society as it was years ago. It seems almost presumptuous for someone to assume that I would understand or appreciate such a statement. Still, I often translate “I am praying for you,” into “I’m keeping you in my thoughts,” and it’s all good.

This leads me to the grand finale of absurd statements.

“Remember, Mitch, everything happens for a reason.”

No. Just no. Please leave now.

Not so absurd things you might say instead

What should you say to a person with MS? This is highly dependent on the nature of your relationship. For acquaintances, tread lightly:

“I’m sorry for what you’re going through.”

“I admire your resilience.”

Most importantly, resist the urge to give advice.

For close friends and relatives, also proceed with caution, but there’s room for more intimacy, room for commitments:

“Is there anything I can do to help right now?”

“Please call anytime you want to talk.”

“You’re not in this alone. You can’t scare me off this easily.”

Friends and family

Like acquaintances, friends and relatives must also resist the urge to give advice. But, for close relationships, there is wiggle room if the person with MS is making harmful choices. Be forewarned, however, that such intervention will require patience, tact, and unconditional love.

What are some absurd statements to which you’ve been subjected? What are the most thoughtful and comforting statements?

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

  • doublebreve
    1 week ago

    You look so good! Lol
    This makes me think, “should I look worse so people know what kind of pain Im in or what it took 4 my husband 2 get me out the door”?!?
    I will look my best no matter what..I went from cane 2 rolling walker now. Try 2 keep a cure haircut & always in my signature red lipstick & a smile. I dont care if people sobt think Im sick. I have MS seizure disorder & stroke from a mugging. Ive been progressing since I was 30. I worked up until 3 yrs ago Im now 53….Over the 23yr Ive heard every well meaning person with there version of comfort .dont judge them..they dont know what t say & its as awkward 4 them as is us..So, graciously thank them 4 whatever odd thing they may say! 🙂

  • doublebreve
    1 week ago

    *Cute haircut (not Robert Smith The Cure haircut) lol

  • Mitch Sturgeon moderator author
    1 week ago

    double, you are a saint to be so understanding of the crazy things people say to us. Good for you!

  • Rylee55
    1 week ago

    I live in a small city that for many years was notable for its high population of new age types. I worked in a health food store as a cashier, and because I was one of the “faces of the co-op”, everyone seemed to feel like they owned a piece of me, like they had just made up their minds that I needed them to be an auxiliary set of parents (the fact that I had a perfectly good set of parents already, and these people were in fact only ACQUAINTANCES, didn’t seem to enter their minds at all: in their minds it was all “The Co-op is just one big happy family!” Well, um, no. Just no).

    Far worse than the unsolicited advice though, were the words of the really hardcore new agers, and I was astounded, and even worse terribly hurt, by some things I heard on a fairly regular basis. The words went more or less like this: “You have MS because (fill in the blank with the following choices) you need to discover what karmic debt your higher self is trying to balance; are holding onto some really dark energy; and the related idea wherein I was told that I have MS because I’m not evolved enough to “just walk away from it” or “just let it go”; and my personal favorite: your higher self “chose this life for you” or “caused you to become ill” because you needed to learn a lesson from your illness. This last being my favorite because I could then reply “No, actually I have MS because there’s something YOU need to learn from my MS”. As a general rule, when I said that, it shut them right up.
    Then there were the ones who told me that I was sick BECAUSE I went to doctors and had Medicare (!!!) One such woman, who just would not shut up about it, was almost 70, but she wouldn’t sign up for Medicare because “having medical insurance would invite illness into her life”. Well, about six months after I met her, she started having pain in her abdomen, and finally went to a doctor, and they discovered a tumor the size of a large grapefruit growing in her belly. Needless to say, it having progressed that far it had already metastasized. One month after they found it, she was dead. I’m sorry to say, that I was kind of thinking “well, you brought it on yourself”.

    So here’s the thing, though: even if you know intellectually that people’s motives for believing that kind of thing about illness come from their fears, that their beliefs that by their state of mind they can prevent themselves becoming ill, it still hurts to have people say that kind of thing to you, especially the “you have MS because you are holding onto some really dark energy”. If people keep saying that kind of thing to you, sometimes you start to wonder if maybe they’re right, even though rationally you know it’s their s***, it really is a challenge not to internalize it and then start to manifest it. I would keep catching myself thinking that it really was my s***! I ended up really just having to cut myself off from that community, and I even had to quit that job, to get my head back together, and get down to the real me again.

    And now, the demographic in this city has changed, mainly because the city started growing really fast, and then one day I just suddenly woke up and realized – in a manner of speaking – that the new agers of that particular sort (because they really were not all like that) had become a very small minority amidst all of the new residents who could care less about that kind of thing. Wow! What a relief! And of course now, when I’m not captive behind a cash register, I can say “thank you for your concern” (and believe me, I don’t smile when I say it, because it’s INVASIVE, and I don’t want them to get the idea that it’s okay for them to say things like that), and then I turn around and walk away.

  • Mitch Sturgeon moderator author
    1 week ago

    Rylee,

    Thank you so much for writing. Isn’t it ironic that we call these people ”New age” when they are no more sophisticated than our ancestors hundreds of years ago. I’m sure neither you nor I really care what these people think, it only matters when they try to force their ideas upon us, unsolicited.

    I’m glad to know that you no longer live among so many of those people. It’s much easier to deflect such rudeness when it only happens occasionally. Good luck to you!

  • Julie
    1 week ago

    I was diagnosed after 30 years of marriage. My husband said he “can’t deal with my MS anymore” and left.

    Well, where do I go to not deal with it? Seriously, I would love to know because I want to go too!

  • doublebreve
    1 week ago

    Julie, Im so sorry & disappointed in a human being who took the “For Better” part & left you with the “or Worse” mentally emotionally & physically!
    (Sorry Mitch, I know you dont like this term)
    I will pray 4 you Julie that you can come 2 terns with that loss & that fact you have this chronic illness. You probably had it sooner, they just figured it out..its not easy 2 diagnose. Time & circumstance can overtake anyone but the God can comfort you in your trials. He didnt cause it, in fact He feels hurt in His when He sees suffering..Lean on Him 4 comfort! Christ has a name: Jesus & God has a name: Jehovah(Psalm 83:18)
    knowing that can help you draw closer 2 Him. He sees your pain & treachery ( 4 lack of a better word) that youve experienced & it doesnt go unnoticed. Call on Him & he will give comfort, naybe not in a way you asked of him. but you will know! “Do not be anxious over anything, but in everything by prayer and supplication along with thanksgiving, let your petitions be made known to God; 7 and the peace of God that surpasses all understanding will guard your hearts and your mental powers by means of Christ Jesus.”Phillipians 4:6,7 I hope this gave you some answer.
    Make sure you take care of yourself Julie! Ok!?!

  • Mitch Sturgeon moderator author
    1 week ago

    Julie, I’m so sorry for what you’re going through. When I first learned that so many well spouses leave their spouses with chronic diseases, I was blown away. But it is much too common. I’m so fortunate that my wife seems to be sticking it out.

  • dirtclod
    1 week ago

    In response to my attempts to deal with my MS and the many problems presented to me in my everyday life I received the observation from a friend that “it seemed I wasn’t trying hard enough.”

  • Mitch Sturgeon moderator author
    1 week ago

    Oh my. Can it get any worse than that?

  • Najee
    1 week ago

    I think the comment I hate the most is ” I know someone with MS and they are doing great, they are still able to work and walk” . Well that is good for them. MS effects everyone different.

  • Mitch Sturgeon moderator author
    1 week ago

    Indeed! That one drives me crazy as well.

  • vvxjr9
    1 month ago

    I have heard most of those absurd hurtful statements. What really gets me the most is “I know how you feel?” No, you don’t, is absolutely right. We can never explain how exactly MS affects us in so many ways, how it really affects everything about us.

  • Mitch Sturgeon moderator author
    1 month ago

    vv, I thought that one would strike a chord with quite a few MSers. It’s probably not a wise thing to say in any situation, let alone when speaking to someone with a chronic disease.

  • Emyoga
    1 month ago

    I’m new to reading blogs and trying to connect with others who live with MS. It was freeing for me to read this article. Thank you.

  • Mitch Sturgeon moderator author
    1 month ago

    Good for you — reaching out and connecting with others in the MS community can be rewarding in so many ways. I’m glad you enjoyed my article. As you can probably tell, it was part serious and part tongue-in-cheek, but sadly truthful.

  • Bkboo
    1 month ago

    For once I’d love it if some one stated I got you and I hear you.

  • Mitch Sturgeon moderator author
    1 month ago

    Indeed. Those are simple, honest sentiments.

  • collena
    1 month ago

    “What doesn’t kill you will surely circle back around for a second try.”

  • Rylee55
    1 week ago

    LOL! I love that, and I’m gonna use it!

  • Mitch Sturgeon moderator author
    1 month ago

    I love it!

  • jn99
    1 month ago

    I was asked on a 2nd date “so what did you do to cause the MS….No, but really, what did you do?”
    I’d like to say that was the 2nd and LAST date, but I’m embarrassed to admit there was 1 more.

  • Mitch Sturgeon moderator author
    1 month ago

    jn99, oh my. As if dating isn’t hard enough without MS.

    I sometimes wonder what I did to get MS, LOL. What if they find out someday that MS is caused by… (Insert any terrible, embarrassing habits here)?

  • Rylee55
    1 week ago

    Yeah, like “well, I think I got MS because I always put my panties on one leg at a time!”

  • Janus Galante moderator
    1 month ago

    Wow is right susie0501,
    the are you drunk, or have you been drinking thing is always disheartening. Especially when all you’re doing is trying to walk or maintain your balance! Janus

  • Bkboo
    1 month ago

    I seem to know when its age or MS because my vision can get better and worse if its hot or I am tired…along with balance, cognition issue etc…

  • Mitch Sturgeon moderator author
    1 month ago

    Yes, I’m the same way. If I suddenly feel weaker than normal, I can usually look at the room temperature or outside temperature and realize that it’s over 75°.

  • MargaritaMaria
    1 month ago

    Oh yes. And they always say, “I met someone who had cured themselves of MS by…” One of these came from one of my nieces who was recommending I have one of my arms stung all over by thousands of bees. Really?

  • Mitch Sturgeon moderator author
    1 month ago

    MS is such an unpredictable disease. We don’t know what causes it and we have few good treatments for it. These facts make MS particularly susceptible to urban myths and old wives tales. I only wish people could resist passing them along to us!

  • Shasha
    1 month ago

    No need for a come back. Just know they are trying to connect with you in the best way they know how. Educate them about MS so they can educate others also. No gluten etc helps my MS and taking supplements/detoxing/avoiding chemicals/getting sunlight/Vit D3/coenzymated B vitamins and more. Stress can steal B vitamins/Zn and progesterone that helps the brain/body/myelin. I can’t eat 99% of what is in the grocery store. I need pure foods that are low in sugar/gluten free/no heated oils/no dairy/no processed food. It is how people used to eat a long time ago and Asian diet. MS people to me can heal, but need a life style/diet change etc.. Infections may hurt and chemicals. Gluten may hurt the whole family tree in different ways…different health issues from it. I know one MS person who wanted to heal and healed fast from LDN/no gluten/no dairy etc and another who is too stubborn/has ego wanting to do things HIS way and he is not healing…is getting worse, but refuses to change. Each person has a chance to learn/change/do what may help. Natural help saved my life and is what suppresses my MS. Statin drugs/antidepression medicine/antispasm drugs/MS drugs may not help and may keep a person sick which keeps the doctor having his job. Natural help is awesome. LDN is less than $1 a day from a compounding pharmacy. Thyroid medicine is cheap, but often withheld from MS people. Supplements are cheap. Organic food..have your own garden. Natural help to me is God’s way and helps suppress my MS.

  • Janus Galante moderator
    1 month ago

    Thank you Shasha for your posts. I wholeheartedly agree that each person must learn, change, do what may help them.

    We know that each person has their own path to walk in their course of m.s. and that each one will respond differently to their own choices that they make along with the help of their health care provider(s).

    We encourage each individual to seek their health professional’s guidance for any medications they choose.

    I am so glad that for you, choosing the natural route has been beneficial and that you’re feeling better!

  • Shasha
    1 month ago

    I have MS and ego blocks many people from doing natural help. They are blocking their own healing, but not being open to natural help suggestions. One MS friend drinks soy. If you can’t have dairy then gluten can be an issue, Soy is usually GMO with Roundup, but he still drinks it and his MS is getting worse as it blocks his thyroid. He is not open to changing. MS people can heal with natural help. It is not just the brain that is affected, but the gut lining so less nutrients absorb. Natural help saved my life and healed my other MS friend fast and now her life is back to normal eating gluten/dairy/soy/heated oil free and low sugar. People can heal. Be open…God maybe trying to help you! God is real. Don’t be the person blocking your good. An MS person lives across the street from me. She is not open. She is on a drug that makes her paranoid…lowers B vitamins and may stay sick. The answer is already here in natural help..no research money is needed. There are two kinds of help…Conventional that mostly covers symptoms and lowers the immune system and natural which to me is God’s way to fix/rebuild cells to work right.

  • Lenschmidt
    1 month ago

    I really don’t think Shasha’s comments are helpful. Rather, they are hurtful and don’t belong in this positive enviroment. They do not follow the Community Rules. My MS has nothing to do with my ego or with your god. My MS is a degenerative neurological disease. As Mitch says above, “It’s not a matter of effort or talent or will. This is an incurable disease.”

  • DonnaFA moderator
    1 month ago

    Hi @Lenschmidt,

    It is important to remember that everyone copes with their disease in their own way and what works for one person may not be right for the next – and that’s okay! Being able to share different ways of dealing with MS and respecting each others differences is what makes this community so great.

    We appreciate all of our members sharing their views respectfully and expect our community members to do the same for each other.

    Thank you for being here and sharing your thoughts. We hope you are enjoying connecting with others in the community 🙂

    Warmest wishes,
    Donna (MultipleSclerosis.net team)

  • Susie0501
    1 month ago

    I have been asked a lot if I was drunk because they see me lose my balance. I get so mad! I even had a doctor ask me if I had been drinking because I could walk a straight line and lost my balance. Wow!

  • Rylee55
    1 week ago

    When I first started walking with a cane, it was initially because I found that if I was walking with a cane people never thought I was drunk. I was reeling a bit from balance issues. Now those have gotten much worse, and I need the cane more than I did before. It does seem to help with the “public image” thing though – LOL!

  • Shelby Comito moderator
    1 week ago

    I know many here have also discovered that a cane or some other kind of assistive device can serve as a helpful sign to others, @rylee55. Although it’s a shame that we can be so quick to make judgments and that there is not more awareness of chronic illnesses and disabilities among the general public, I’m glad that the can has been helpful. Thanks so much for sharing your experience @rylee55! – Shelby, MultipleSclerosis.net Team Member

  • Shasha
    1 month ago

    Yes…famous celebrities with MS have been asked if they were drunk. Coconut flakes help my brain and no gluten. Gluten made me dizzy. Sugar swells my brain so low sugar is needed. Grounding…connecting to the soil helps me. Supplements of vitamins/good oils/minerals/probiotic help me. God bless!

  • Mitch Sturgeon moderator author
    1 month ago

    Yes! This is a bad one. I remember, before I was in a wheelchair, I almost looked forward to the day I was in a wheelchair so that everyone could clearly see there was something wrong with me. Like you, I was tired of them trying to make sense of my gait problems.

  • Susie0501
    1 month ago

    You have MS? You look so normal. I can’t stand that statement.

  • Shasha
    1 month ago

    Just say if someone has cancer they also look ok on the outside. Hair test shows good minerals/heavy metal levels. Detoxing mercury by sweating/taking Zn helped me and taking supplements for good minerals that were low.

  • Mitch Sturgeon moderator author
    1 month ago

    Yup. So innocuous on the outside. So cruel on the inside.

  • doll1976
    1 month ago

    Thank you Mitch!! This was a great read! It made me really lol! We ALL have heard these lame statements hahaha! Take care

  • Mitch Sturgeon moderator author
    1 month ago

    Doll, thanks for dropping by, and thanks for your kind words.

  • michael honeycutt
    1 month ago

    I had a very interesting experience once. I was at Walmart in my wheelchair. I was waiting by the exit while my darling bride of 39 years was checking out. Some little gym rat walked up to me and said, “If you’d just come into the gym with me, I’d have you out of that chair within 3 months!” Now, this dude had an upper body and arms like Ahnold’s, ya dig? But his legs were toothpicks. I asked him a question, “WOW your gym has equipment that will strengthen my arms and legs and back and will perform neurosurgery to fix destroyed nerves! Those are some bithcin’ machines! Why aren’t they working on your legs?” Shut him up and shut him down, right in front of his two 7-8 year old boys.

  • doll1976
    1 month ago

    Hahaha good 1!

  • Mitch Sturgeon moderator author
    1 month ago

    Good for you, Michael. Outrageous statements deserve biting responses!

  • proverbs3125
    1 month ago

    I dislike when people say “I saw a billboard, commercial, article, etc about MS and thought of you!” Ugh! Out of all the things I do, have, or like, something related to MS is what reminds them of me?! That’s frustrating. I usually respond light heartedly with “Oh, yeah, I still have that. I was hoping you saw something about ….. and thought of me.”
    One I experienced for the first time yesterday was “do you ever think about what your life would be like if you never got MS?” I was NOT prepared for that question. My response was “No I dont because that is depressing.” HA!

    I heard over and over again “OMG! Did you see that Selma Blair has MS too?! She looks great!” Eye roll. Yes, I did see that.

    I usually take all the other comments with a grain of salt. People just try to help. They dont know what to do to make it better (because they cant) so they try to fix it. MS is awkward and inconvenient and it’s just be easier for others to try to find a solution to fix it than to accept there isn’t a cure (yet!). Awkward, inconvenient and open ended things are tough for people to accept so they dont know what to do with themselves when there isn’t an answer. But for a person with MS, a good answer is to be there for them. You dont have to say anything. Just be next to me and agree “yeah, this sucks”.

  • Shasha
    1 month ago

    If I see someone in a wheel chair I like to know if it is MS or an accident etc. To me people can heal. People may have no clue what MS is. I found information on MS in my son’s back pack. He may be was worried and didn’t know what MS was. Just educate people and then they can educate others around them also. People mean well, but don’t know what to say.

  • Mitch Sturgeon moderator author
    1 month ago

    Proverbs, bravo! Well said! Perfect. Mic drop.

  • Bkboo
    1 month ago

    I will say I can see well today….and some one says I know with age that happens. and they move on to something else. Im left there thinking…..my brain takes a minute….then I realize when I get home and think what the heck! AS I am trying to switch glasses that wont help! grr

  • Mitch Sturgeon moderator author
    1 month ago

    yup. That drives me crazy too (with regard to walking not vision). Truthfully, I often don’t know the difference between aging problems and MS problems, but I don’t like others dismissing my progression as aging.

  • Bkboo
    1 month ago

    I cant see lol not can

  • Anthony H.
    1 month ago

    If it’s a well-meaning stranger who’s accessed some random thought or bit of information they’ve heard that they thought might be helpful, I try to listen for the intention, not the actual words they are saying. Generally, I don’t get offended.

    I had some Swedish 20-somethings come to my door spreading news about their church pantry. I told them that I get my groceries delivered, and my problem is too much food, not too little. I told them about my MS. One said I should get checked for Lyme disease, and had I tried a vegan diet?

    I gently fended that off saying my doctor had checked for many possible alternative illnesses when I was being diagnosed. Also no, I hadn’t tried a vegan diet, but that there is some evidence that an anti-inflammatory diet may be helpful (fish, fruit, vegetables and some whole-grains) and I try to follow that.

    They also offered to say a prayer for me right there. I said no, but next time they were praying to please remember me (I’m not religious, but it might make them feel better!)

  • Shasha
    1 month ago

    My MS is due to gluten/dairy/soy/sugar/heated oils etc..low sunlight heritage and current low sunlight etc.. I recently got Lyme/coinfections. Not all MS people have Lyme/coinfections but most people may have at least one infection…Epstein/barr which is mono hiding in them. A Zyto scan shows infections in 4 minutes. Fixing the root cause is needed to help the brain/body work right. Whole grains may hurt people. Gluten is wheat/barley/rye..oats/corn/rice. Rice is low in gluten. Wild rice has no gluten. Gluten may destroy the stomach/intestines so less nutrients absorb which the brain/body cells need to work right. Grain free for pets may also help them live a long life and no vaccines. People/pets can heal. Prayers do work. God is real. Be open to what others may say since it maybe God trying to talk to with you. God bless!

  • Shelby Comito moderator
    1 month ago

    Hi @Shasha, thank you for participating on our site. Despite much effort and research, there are still no clear answers on what actually causes MS which you can read more about here: https://multiplesclerosis.net/causes/

    I appreicate you sharing your research and personal experiences, but it’s important to note that people can respond very differently to diets and treatments. It’s best for people to dicuss their options with their doctor before trying anything new.

    I’m so glad you found a regimen that’s been so beneifical for your symptoms and thank you for letting others know about it here.

    – Shelby, MultipleSclerosis.net Team Member

  • Anthony H.
    1 month ago

    Hi Shasha – Yes indeed – when I was being diagnosed and had blood tests for all kinds of conditions, it came back positive for antibodies to Epstein-Barr virus (mononucleosis) and varicella virus (chickenpox, shingles), so there is a good chance that I have those viruses still lurking in parts of the body the immune system can’t get to.

    One of the neurologists that I have consulted says that Epstein-Barr virus is almost universal among MS patients. Does it play a role in the genesis of the illness? Does its continued presence affect the course of the illness? — Lots of stuff for

    More recently, I have started on Ocrevus infusions. I have also started getting urinary tract infections (UTIs), which is unusual for me. Perhaps the two are related – I don’t know.

    Most recently, I had a UTI that I wasn’t even aware of at the time which in 24 hours pushed my temperature up to 39.5 degrees Celsius / 103 degrees Fahrenheit. Because of the body heat-related weakness that I get with MS, at the worst I couldn’t raise myself up from a lying-flat position.

    With lots of paracetamol/acetaminophen and an antibiotic drip I was soon back to what’s normal for me, but it drove home to me how quickly a concurrent infection can affect someone with MS.

  • Mitch Sturgeon moderator author
    1 month ago

    Anthony, I admire your patience. You are correct — almost all the statements from random people come from a good place. Your ability to calmly address the suggestions from the twentysomethings is amazing. Thanks for sharing.

  • Kim
    1 month ago

    My Mil,who is somewhat of a hypochondriac, has developed some stiffness, and difficulty walking long distances. She is much more mobile than I am, as I rely on a walker for short distances, and an electric scooter for longer distances. A couple of years ago, she said he legs were aching, and asked if I wanted to switch legs! I often just shrug her comments off, even when they seem unkind. This time, I wasn’t having it, and replied, I don’t think you’d want my legs, because they hurt all the time. I just choose not to dwell on it, or tell everyone I see.

  • Mitch Sturgeon moderator author
    1 month ago

    At the risk of sounding prejudiced against elderly people, I went through the same thing with my father. As he aged, and it became more difficult for him to walk without pain, I went from a healthy thirtysomething to a fortysomething in a wheelchair, quietly listening to my father’s complaining without pointing out to him that my changes were both premature and more severe than his.

    This is not to say that he had no compassion for me. He had plenty. But when it came to complaining about getting old, he didn’t hold back around me.

    Kim, I admire you for speaking up to your mother-in-law!

  • mollyculelove
    1 month ago

    Spot on article! However, I think worse than any hurtful or dense comments, is when you tell people that you thought cared and really loved you, about your disease and they have NOTHING and NO comments to say to you at all…

  • Bkboo
    1 month ago

    YEs the worst is sayong nthing at all!

  • Mitch Sturgeon moderator author
    1 month ago

    Yes! Nothing could be more awkward than saying nothing at all.

  • jen2
    1 month ago

    Mitch, Thank You!! If people just had to live in our shoes (1) day…!! They’d see how weak they really are…

    You are so right about the ‘I’m so upset because of your MS’, heard that from my mother until I finally lost it…’Last I knew, YOU weren’t the one looking in the mirror every morning & facing the day with MS. If I’m not playing the victim, you certainly can’t either! It’s MY MS!’

    I’ve decided to live my life, laughing at the stupid things that this stupid disease does to me!!
    I have one girlfriend who will often say that I am the best party-trick, ‘give her a couple drinks & watch her walk down the hallway!’! People think its mean, tasteless. Its not meant that way at all… she would be, & has been, the first person at my side when I have fallen or had to go to the hospital… she is the friend that has been there for my daughters when they haven’t understood what’s going on…
    My college roommate said to me once ‘I don’t know what you go thru every day, but please tell me if I ever say or do something that upsets you- I just don’t know..’ That is the most honest statement I have had said to me… and, she’s picked me up when I have fallen, too!

    I am VERY fortunate to have wonderful friends in my life… I have heard ‘You’re not in this alone. You can’t scare me off that easily.’ Those words only come from people who truly care… the ones that will lay down next to you on the sidewalk & start chatting about what hairstyle would look best when falling (after first making sure I am ok!) or the ones that will climb into your hospital bed & hold you while you cry… whether it’s good or bad, they always care…
    The rest… we tell them what they want to hear, and move on…

  • Mitch Sturgeon moderator author
    1 month ago

    Jen, I can’t believe you said to your mother what we’ve all (well, most of us) have wanted to say to our mother, or grandfather, or cousin.

    I certainly admire the attitude you’ve taken about laughing at the disease whenever you can. And what you say about friends — MS helps you filter out the bad ones doesn’t it?

  • AnywhereOutOfThisWorld
    1 month ago

    I totally relate to this article. I think most of those who makes comments, probably mean the best but they come across as clueless nonetheless. I live alone and am on disability and for me every day is a struggle. I can still walk & drive for now (I don’t drive too far), but I don’t equate this with me being highly functioning. I don’t like to whine because most people have no idea what Ms sufferers go through so to whine would be a mute point. I appreciate sites like this where I can connect with others who can relate.

  • Mitch Sturgeon moderator author
    1 month ago

    Nobody understands like another person with MS, that’s for sure. We try to explain to our friends and loved ones, but it’s nearly impossible for them to get it. Like I said on another comment, I’m glad I didn’t get MS before the Internet, before I could commiserate with so many other folks with MS.

  • Yoshitail9
    1 month ago

    Best one that I got because I looked so good was

    “YOU’RE LUCKY”

  • Bkboo
    1 month ago

    Oh yea heard that one too! People say I cant believe you have MS you look good!

  • Mitch Sturgeon moderator author
    1 month ago

    Lucky? That’s about the last word I would use to describe someone with MS!

  • KimmyK
    1 month ago

    What most don’t know is the MS diagnosis comes after years of symptoms, for me 3. During those three years of not being able to feel anything waist down I saw pretty much every “medical” provider, conventional & unconventional. I was poked,scanned, manipulated – you name it. As indicated, I appreciate folks having my back but it is tiring when literally anything pertaining to MS gets sent my way. I’m so much more than that, but then when it counts people are clueless. Here’s my examples from yesterday & today.
    My feet hurt 24/7 so yesterday I went into a specialty shoe store to see what options were available. Explained in brief to the clerk. To observe my gait I was asked to walk in just my socks which I did. He repeatedly yelled “faster”, “faster”. “AW, MAN,do you always walk this slow?”

    My parents are 76 and 80, both in poor health & in -out of hospitals since July. Finally both home for 2 weeks, I call almost every day but have been trying to focus on my health, house and life. Dad calls to tell me I need to come over (I’m on disability and live in another town). “Haven’t seen me in awhile and he needs me to go to the store. Mom’s F’d up”
    My brother lives 5 minutes away and is healthy. I talk to my Mom, he’s deaf and Mom just went grocery shopping I know this because she hurt herself doing it.

  • Bkboo
    1 month ago

    I can relate….brother is close and nephew across the street! Im almost 60 and do a lot for my mom, mow, etc….she is in her mid 70s.

  • Shelley D.
    1 month ago

    Hi Mitch, thank you for the well-written, and very real article! I loved your description that “my body is canabalizing my CNS…not making me stronger.” Are we supposed to be happy that MS doesn’t “shorten our lifespan”? I’ve always felt that suffering is worse than dying. Sad was the day when I realized that is exactly what MS does…cause suffering…diminishes our quality of life! I am not whining or looking for pity. It just makes me angry that death is my “light at the end of the tunnel”. Whatever happens next, I’m looking forward to it!

  • Mitch Sturgeon moderator author
    1 month ago

    Shelley,

    Thank you for your kind words about my article. I hear what you’re saying about suffering. MS is hard, and no, it doesn’t make us stronger, at least physically. I have found, however, that I have become a more compassionate person because of my MS. In the distant past, I didn’t give enough sympathy to those less fortunate. Now that I’m among the less fortunate, I’m a better person in that way.

    And, at least we have groups like multiplesclerosis.net and others. I wouldn’t have wanted to go through this before the Internet.

    Take care and keep checking in with comments!

  • Lissaj
    1 month ago

    just thought about another one my ex co worker use to say to me everytime the weather was raining or snowing. thats when I hurt the most cold and raining weather.
    I could have choked her very time she would say this too me. Man you must hurt today, the weather is crappy. I feel so bad for you. you know I read up on MS and I know what your going through.
    NO YOU DON’T AND STOP SAYING THAT TO ME EVERYTIME THERE IS BAD WEATHER. UGHHHHH!!!!!
    She is no longer working with us 🙂

  • Mitch Sturgeon moderator author
    1 month ago

    Yuck. It’s bad enough to say they know what we’re going through, but to think that they can learn this from a book or an article — amazing!

  • Lissaj
    1 month ago

    so true so true, drove me crazy.

  • slaughteringMS
    1 month ago

    It irks me when someone reacts with surprise upon hearing that I have MS and saying “Oh wow! You’re high functioning!” because I can walk, I guess. It’s meant to be a compliment, but I feel like they’re thinking, “but the s**t’s gonna hit the fan someday!” That’s why I’ve tried to only tell people on a need-to-know basis. I’ve got enough bad stuff going on in my head and don’t need to invite more!

    But you know what, almost everyone over the age of 30 has something wrong with their health. The best we can do for each other is offer a kind word. Some are better than others, but what can you do.

  • Shasha
    1 month ago

    Some people may not believe people have MS if they are not 100% disabled. Gluten/dairy/soy/sugar/GMO/food with a label/heated oils hurt me and eventually dairy gave me seizures and gluten made me dizzy etc. People can heal. Heal the gut lining and the brain/body may get the nutrients it needs to work right. God bless!

  • Mitch Sturgeon moderator author
    1 month ago

    Such a thoughtless thing to say — minimizing your situation. You are so right. Almost everybody has something wrong with their health and it is wrong for any of us to assume we have an idea what others are going through. And you are right again about kindness. It’s the key to living a compassionate life.

  • Lissaj
    1 month ago

    My boyfriend gets on me about not being able to keep up and being tired all the time. When I look at him with I don’t really care what you think right now eyes he comes to me and say “im sorry I forget what your going through becasue you don’t look sick, and most of the time you can keep up “Your a real trooper and I’m proud of you for being so strong.”
    there are days when I feel like its too much and I give him chance to walk away with no regrets, he will tell me he is in this to the end, for me to stop trying to push him away. He can only see his self with me, yes even if he has to take care of me for the rest of my life.
    Drives me crazy when he talks about diets, and treatments he has read up on and working out. All the stuff you have mentioned. I hate it its because I either hurt too much, too tired, or I just plain don’t like it and I’m not going to do it. so I do wish he would ease up on trying to make me better.
    I did recently tell him to stop saying”things will get better one day”. As much as he tells me that I know I’m not and can tell things getting worst. I told him saying that to me makes me feel like my final day is coming so when things WILL GET BETTER because I wont be here to feel the pain anymore or suffer.
    He said no, thats not what I want or saying I said well thats the way you make me feel. He doesn’t say it anymore

  • Mitch Sturgeon moderator author
    1 month ago

    Lissaj,

    I’m so sorry for what you’re going through with your boyfriend. Sometimes people don’t care about us enough. Other times, they care too much, and smother us. In the first case, when they don’t care much, there is little that can be done. The good news for your relationship is that maybe it can be saved, and it is probably worth the effort.

    You’re on the right track with frequent and honest feedback about how the things he says affect you. You’re also on the right track by not simply allowing him to go on about things like diets and treatments. Let him know that he simply needs to be there for you, and ask him to resist the urge to fix you.

    Hopefully he can make the adjustments that you need him to make. Keep giving him feedback, and keep acknowledging his efforts to be more understanding (assuming he does become more understanding).

    The MS Society as a resource you might be interested in https://www.nationalmssociety.org/Living-Well-With-MS/Relationships

    Good luck!

  • Lissaj
    1 month ago

    Thank you so much Mitch. I just joined maybe about an hr ago and I think I’m going to like it here. A new family. 🙂

  • rmcoble
    1 month ago

    By the way Mitch, great article, and thank you. I have RRMS, started on Copaxone first, now on Tysabri every month….so sometimes I look good lol…even when I am hugging walls, or using a cane, I hear well at least you aren’t In a wheel chair so are the doctors sure you really have MS> … crushing.

  • Mitch Sturgeon moderator author
    1 month ago

    “Well, at least you aren’t in a wheelchair, so are the doctors sure you really have MS?”

    We may have a new leader in the most outrageous comment competition. Jeesh.

    Glad you liked the article.

  • rmcoble
    1 month ago

    I have heard more comments from a few who just want to be the center of attention. My MS must threaten that place, because when I am tired, they are too, when my legs spasm after a long bike ride, so do theirs and everyone else they know. My brain lesions, they are probably aging lesions!!! It is like having to continually feel as though I am just a faker. Another comment is about heat sensitivity. “If you just stay under an umbrella you wouldn’t have those issues.” So, now I joke about my magic umbrella. Another: “At least MS won’t KILL YOU, like my Crohn’s!” And of course, the all popular!!! “YOU, LOOK, GREAT!”

    Some positive comments, are: “I am sorry you are going through this” “How are you?” “MS sucks, right?” “You got this” …

    It is disappointing that there are far too many negative or condescending comments. And worst, are those who just ignore you are sick at all, because they need to be all encompassed.

  • Mitch Sturgeon moderator author
    1 month ago

    Regarding your question about a person who has to one-up you on everything you experience, I think you have 2 choices, right? If they are someone that you can easily avoid, I would start the avoiding right now. If they are someone you have to deal with, then a heart-to-heart is in order. Don’t be accusatory, but do let them know how their words make you feel. Assume they truly don’t know. Does anyone else have a suggestion?

  • Mitch Sturgeon moderator author
    1 month ago

    You have a good feel for human psychology. There certainly are those types who bring everything back to themselves, and there are those types who are just thoughtless. Thank goodness for those genuinely empathetic people who consider what they’re about to say before they speak!

  • rmcoble
    1 month ago

    Thank you. I have very supportive people, and many who are on the other side, as described.

    How would you respond to a particular person whom has everything I have or worse? It is really getting me down, thereby I have begun to hide my disease. The comments joking, using words like “Faking” is just not funny. Why, would I fake and is it possible to fake having MS?

  • poppydarling
    1 month ago

    Oh yesss. High five. I’m so sick of being an unwilling sponge for everyone’s projected revulsion, fear, aversion, etc. It’s exhausting. I try to imagine myself made of Teflon now 🙂

  • rmcoble
    1 month ago

    Yes, we are required to be impervious to all comments, to all, to all, to all. . . .

  • Mitch Sturgeon moderator author
    1 month ago

    Poppy, I love “unwilling sponge for everyone’s projected repulsion…”

    A fresh coating of Teflon is definitely called for every now and then 🙂

  • hcvasusan
    1 month ago

    Great list. My personal worst comment is “MS? No, your hormones are just out of balance.” It was followed by which hormone I needed to address and how. Yeah, right. I don’t share with or count on that person anymore.

  • Shasha
    1 month ago

    Progesterone helps myelin and Vit B12. I have MS, but doctor will not say it is active since he can’t see my right foot is numb or cheek etc. Just be open to learning. I take Bioidentical hormones..estriol/progesterone/testosterone which save my life. Some can use herbs. Genova test is for hormones or vitamins or allergies. Hair test is for good mineral levels and heavy metals. Fix the root cause. God bless!

  • Mitch Sturgeon moderator author
    1 month ago

    Oh, if I was having a competition that one would be near the top. Hormones? I would say that person has the dual deficits of being uninformed and socially awkward. Bad combination.

  • rmcoble
    1 month ago

    People in our lives, I hope, take the time to be informed. But, few bother. When my husband had lymphoma which started in his tonsil. No matter how many links I copied and pasted explaining, lymphoma is a blood disease not a tonsil cancer, and the tonsils are part of the lymph system…. Many, still asked why he had to go through Chemo.

  • mickims
    1 month ago

    Right now I am dealing with a friend who really means well. She is insisting that I see a movie with her having to do with nutrition. Apparently the woman who wrote the movie has MS and has done well on the diet. I’ve put her off as long as I can and, on Friday, will go to her house and see the movie. She went through the trouble of getting the DVD. BUT, at 75, I might alter some of my eating habits but, pretty sure, I’m not changing a whole lot of things. Like I said, I know she means well but, sure wish she’d taken the hint when I put her off . I’ll do a movie critique later. Meantime, I loved your article – loved the answer about standing under a tree. With my sis and I, we would have been on the floor hysterical if someone said something like that to me.

  • Shasha
    1 month ago

    She maybe showing Terry Wahl DVD? NO gluten may help MS. People can heal and it is never too late. I knew a lady who died of MS…got a cold which eventually killed her, but she could have healed. There were doctors in the area what would have given her the basic things she needed for help. She had her thyroid removed, but was not given thyroid medicine. She needed thyroid medicine..was very cold/had all the symptoms of low thyroid. She was not getting Vit B12 and ate white bread..was not gluten free. She could have healed, but let herself go. I know many MS people who died..not in a good way. Antibiotics may hurt and gut lining issues were not helped by no gluten…some were not given oxygen and more. Some had allergies..red cheeks, but didn’t stop gluten which can cause leaky gut allergies. Ice cream hurt me ..had to stop it. I prefer to walk then eat something that is only in my mouth a few seconds. I keep a journal…date/time/what I eat/symptoms/supplements etc. Doctors may withhold thyroid medicine from MS people due to low TSH, but they still need it. The Pituitary may not be making TSH. Make time for health and you may heal. God bless!

  • Shasha
    1 month ago

    Gluten is like Heroin and sugar is like cocaine so some people don’t want to change and crave even more. God took away the junk and I am left with the best food…organic/Asian like diet…no gluten/dairy/soy/sugar/GMO/food with a label/heated oils etc and I take supplements/detox/probiotic. People can heal. Once I stopped the junk I don’t want it any more…donuts etc are poison to me and a few minutes on my lips/tongue is not worth 24 hours or more of pain/suffering. I eat for health not not for taste, but my tongue has been reeducated and the food I eat tastes awesome! God bless!

  • Mitch Sturgeon moderator author
    1 month ago

    Oh, that’s a tough one. Personally, I’m a bit skeptical about dietary changes affecting MS, but I know a lot of people who have anecdotal stories about success. You are showing great patience with your friend…

  • ebrownkirkland
    1 month ago

    I was once told, “You should stay away from artificial sweeteners. They can cause autoimmune issues.” Yeah, I know Splenda probably isn’t great for me but I don’t think I caused my MS because I used it in my coffee. And diet soda didn’t cause my MS either.

    Then there’s the thing about essential oils and how they “healed” someone’a MS. Um, no they didn’t.

  • Shasha
    1 month ago

    Diet soda may hurt the liver. Splenda is not healthy. Stevia may kill Lyme if you have that. Coffee is healthy and tea. I don’t like essential oils since a person needs the real thing like Lemon or lime juice in water. No gluten may help more nutrients absorb from food which can help rebuild cells to work right in the brain/body. Gluten is wheat/barley/rye..oats/corn/rice. Rice is low in gluten and wild rice has no gluten. Grains may also have Roundup on them. The Wheat Belly book shows people healing fast from many health issues just from no wheat, but gluten is in other grains also. People can heal, but need to maybe stop eating something for a few weeks and then see how they feel and then eat it again and notice how they feel. My MS stopped when I went wheat free, but I didn’t notice and eventually ate it again. Asian diet is awesome and people can learn to eat in a way that only helps health. God bless!

  • Mitch Sturgeon moderator author
    1 month ago

    sigh… I’ve heard all these things as well. To be honest, however, if it comes from someone who I consider a nice person, I just smile and nod and let it go. But if it comes from someone who I consider to be an annoying person, I’m not is patient with them.

  • Mo50
    1 month ago

    Before I was medically boarded from work I used to cringe when people used to say but you look so well. I was 25 years old and walking with arm crutches on both arms

  • Mitch Sturgeon moderator author
    1 month ago

    Yes, that’s one that most healthy people would be surprised to learn annoys us. It’s just too easy for us to assume that they are either lying or possibly implying that because we look so good we must not be so sick. Of course, most of them are just trying to be nice, but it does get annoying!

  • Suze
    1 month ago

    Great article, Mitch! After living with MS for almost 30 years, I’ve pretty much heard them all. But the most unbelievable was from a co-worker and friend when I was newly diagnosed. She excitedly told me a story she heard on the news about a woman “cured of MS” after being struck by lightening! Then she looked for a response from me, so I asked her if she was suggesting that I stand under a tree in the next thunderstorm in the hopes of being struck by lightening! Awkward silence…….needless to say, she was demoted from friend to just co-worker.

  • Shasha
    1 month ago

    I have 15 infections…Lyme/coinfections and yes..lightning hit that woman and she healed. A great way to help if it doesn’t kill you. People may get infections since their immune system is down due to gluten/sugar etc. People can heal and change their diet to only help. They maybe used to eating a certain way and may not get enough sunlight/exercise/grounding. People can heal. One lady grounding which lowers free radicals/swelling/inflammation and she could walk again, but if she eats gluten/sugar again she will swell up again. A person needs to fix the root cause. https://www.youtube.com/watch?v=J_dgtP0X4bg&t=3s

  • Shasha
    1 month ago

    A Zyto scan shows infections in 4 minutes.

  • hcvasusan
    1 month ago

    Love your response!

  • Mitch Sturgeon moderator author
    1 month ago

    Now that’s a new one. Some people just don’t have filters, and it manifests itself in ridiculous statements like that one. Your response was perfect!

  • slypud
    1 month ago

    The worst comment I heard or recieved was you’re not really sick. Felt like hitting that person.

  • Mitch Sturgeon moderator author
    1 month ago

    That’s got to be about the most hurtful thing that could be said to someone with MS. Unbelievable… You showed great restraint.

  • Tom Bellas
    1 month ago

    Thank you for writing this. Absolutely wonderful.

  • Mitch Sturgeon moderator author
    1 month ago

    You’re welcome, Tom. I enjoy doing it.

  • annieawkie
    2 months ago

    I got “be grateful (you are still mobile)”
    I’m 35 and have a dorsal flexor rating of 2 and hip flexor rating of 2. I use a cane. I am in extreme pain a lot of the time due to compensation.
    But yes, I am stubborn enough to keep walking.
    No, I am not “grateful”

  • Mitch Sturgeon moderator author
    2 months ago

    Good one! Yes, you may find your way now and then to be grateful for this or that, but to be told when to be grateful — that is a doozy.

  • michclaud
    1 month ago

    I was told by a very good friend, at least it’s not cancer. I stated I would rather have cancer at least it will kill you. MS won’t kill you, you just wish you were dead!

  • Dimitri
    2 months ago

    Yeah, it can be so frustrating when even close friends can trigger you.

    A friend once suggested that I read this book because it changed his life. He was adamant that I read it. I have enough problems reading an article on the internet with all of my cognitive dysfunction and eye problems. So then he recommended I check it out on audiobooks.

    I appreciate his concern, but even listening to audiobooks for more than five minutes causes my concentration go on AWOL.

    It’s so frustrating.

  • Mitch Sturgeon moderator author
    2 months ago

    Dimitri, you make a great point. It’s not only what is said, it’s how forcefully they say it. Having said that, you should really read my book, ENJOYING THE RIDE: Two Generations of Tragedy and Triumph. 🙂

  • Dimitri
    2 months ago

    I’ll be sure to check out your book. I perused your blog a bit, too. Oddly enough I was an engineer too. Electrical engineering.

  • Janus Galante moderator
    2 months ago

    Hi Mitch,
    thinking about your questions….the most absurd statement would have to have been..”there is a man on the internet that heals m.s.”

    The most thoughtful was when I was first diagnosed and my mother in law took it upon herself to search out m.s. to see exactly what it was and how each person experiences it differently. That, to me, spoke volumes!

  • StaceyH.
    1 month ago

    Janus,
    I agree completely! Someone taking their own time and their own energy to educate themselves about MS says more to me than any words of advice, prayers, or comforting comments ever could. I believe the reason it means so much to me is that, not only did they use their own time, they cared enough about what I’m dealing with to want to know more about this disease. I think the biggest issue with the lack of support people with MS get from our community and society is the general lack of knowledge for the disease! Before I was dx’d I was the same, completely ignorant. Everything I learned about MS came from researching it myself. So when someone does the same research I did, it makes actually feel understood, by someone who doesn’t have MS, which is really really REALLY rare for me.
    I really appreciate when others take it on themselves to learn about MS and even more so when they research any one of my symptoms by reading forms and comments from others with MS explaining how that symptom effects their life and hearing how someone else describes it.

    Just like you only know of your mother-in-law doing it, I also have only been told of a single person doing that for me. But boy it really felt good!

  • Janus Galante moderator
    1 month ago

    VERY well and eloquently put Stacey!

  • Mitch Sturgeon moderator author
    2 months ago

    Janus, oh my. “There is a man on the Internet…” That is a beauty. So happy that your mother-in-law knew what you needed to know, and delivered it for you.

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