Skip to Accessibility Tools Skip to Content Skip to Footer

When saying “I refuse to let MS win” is wrong

As I was looking through comments on some of this site’s articles today, I noticed what has become an all too common occurrence.  It happens not only here, but on other sites as well, even (ok, especially)  throughout social media.  On articles such as these and even on personal status updates.  It goes like this, someone who is struggling or has struggled with MS talks about their struggles, and without a doubt, at least one person will respond with something like this “I refuse to let MS win” or “I have MS but MS doesn’t have me” or “ I don’t let MS control my life”.  I think you get the idea.  Every time I see this, I think, wow, what an awful and likely insecure person you are to say that to someone who has opened up about their struggles. I’ve seen it so many times (and have had it happen to myself) that I felt compelled to write something to defend everyone who’s had this happen to them!

What seems like helping can actually hurt

I’ve talked about people with MS shaming each other before, and I’ve even discussed my feelings about that whole “I have MS but MS doesn’t have me” phrase, but this is a little different.  This is about those people who, for whatever reason, have to speak up and say something.  They have to exclaim to the world that, oh, I refuse to let this happen to me. Why not just say “this MS is all your fault, if you were as strong as me, you wouldn’t have these issues”? That sure is  what it sounds like to me. I have to wonder if they are intentionally trying to make people feel bad or jealous.  I know the world is full of trolls, but come on!  Maybe I’m superstitious, but if you suffer from an incurable disease that has a tendency to progress the longer you have it, maybe you don’t want to be boasting how you’ve seemingly mastered it to someone who has already progressed more than you.  Seems like a setup for some bad karma to me.

Look, I get it, you’re doing well. You’re happy and proud of that, and you should be.  I think there is a time and a place to display that pride though.  Commenting on a post by someone who has been less fortunate than you about how well you’re doing simply isn’t the right time or place.  Many of us do great for a long time before we progress and get worse.  You may be doing well, and I hate to break to most people, but that isn’t because you “refuse” to let the disease win.  Your strength and toughness has nothing to do with this (people are gonna love to criticize that sentence).  I’m sorry, but it doesn’t.  You’ve lived healthy, got a great attitude, and taken your meds?  Great, most people do, that doesn’t make you any tougher than the next person with MS.  Most people with MS have great attitudes, no matter how bad their symptoms are.  People are going to hate that I say that, but I have to, because I don’t believe that those who have been less fortunate with this disease are any less strong or tough than those doing well.  In fact, it’s probably the opposite of that.

Things have changed

I thought I was doing great too.  I even trained for a marathon while having MS.  I thought I was tough and strong and refusing to let the disease win.  I thought my healthy living and being diligent about my treatment were helping me win at this whole MS thing.  Then I got older, the disease progressed, and the cumulative effects of all those years and relapses eventually made things tough.  That is when I really learned I was strong, that is when my toughness really got tested.  That’s when my tough “I’m gonna beat this thing” attitude was really needed.

People will argue that it’s their “refuse to lose” attitude has helped them fight this disease.  Again, my big point here is this: don’t assume that people who are writing and admitting that they struggle are any less tough or strong than you.  Their attitude is likely very much the same as yours.  Accepting that you have a disease and that life isn’t easy in no way makes you weak.  I again say, I think it makes you stronger.  Denying something doesn’t make it go away, it only means that you’re afraid to face it.  That’s my belief anyway, feel free to disagree.  Even if you do disagree and think your amazing attitude has helped prevent you from having the same issues as others (so far anyway), then exclaiming that to someone else is still not helping anyone but you.  If anything, it’s being hurtful.

You are strong

As always, I mean no offense by anything I say, but I’ve seen people make these comments to others who are also battling this disease and I felt like I needed to say something.  So to everyone who has had this happen, I’m telling you that you are strong, that it’s not your fault this has happened to you.  It’s ok to talk about your struggles, everyone struggles at some point.  This is true if you battle MS or another disease or even if you don’t have any disease. Sometimes life is hard, sometimes bad things happen, and much of the time, we can’t control that.  So don’t let anyone else make you feel like you not a fighter, because you are, no matter what anyone says!  Always remember, having MS is not your fault!

Devin

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

  • Bblue
    2 years ago

    Bravo! I have been very lucky/blessed with my MS (about 20 years now).I can compare my MS to the chronic migraines I had for over 20 years, that got worse year by year. A blood pressure med (given to me for HBP) has helped more than any treatment I was given in all that time. Unfortunately, about the time I started that drug I also started feeling “on a boat” all the time. Have had every test in the book and my neurologist still only says it “Might” be MS. Every other doctor thinks it’s neurological. MS is extremely frustrating and it’s bad enough that people w/o MS don’t understand but it’s really low when people who have it don’t realize that all of us could have our lives change in a flash! Good health is a blessing! It is not something we do for ourselves! No one wants to be debilitated— whether from MS or something like chronic migraine and all the other diseases out there! I have often felt worse because of the stress brought on by other people trying to tell me what to do to control my MS or migraines. What works for one person is not guaranteed to work for someone else! Think about what you say and remember it could be you!

  • Debbie Gu3
    2 years ago

    Okay, I admit I’m one of those people whose mantra is “I have MS, it doesn’t have me” but do you understand why? Let me explain, please remember, this only applies to me. This purely has to do with attitude, when I start to let it think it’s got the upper hand; I literally have to fight back. I always stay positive, never get depressed; I was told at work I was admired for the way I fight my disease; I had no idea people thought that way about me. We’re talking one person who took it to heart, fought hard, but lost in the end to the pain cancer can ultimately cause.

    I’ve had a really hard journey with MS so far; I’m with my 4th neurologist; diagnosed RRMS one month shy of 50th birthday back in 2010. It was a spot on CT scan for something else that inadvertently revealed first lesion; physical exam by neurologist resulted in no diagnosis; didn’t have any symptoms. First symptoms showed up October 2009 as stroke like that totally went away. But transverse Mylitis hit before diagnosis in April 2010, rediagnosed relapse before diagnosis;13 Ocg bands in CSF fluid; very few lesions, but just in right spots to cause most physical damage. Had relapses every April and October like clockwork for a few years. Went through 3 other MS treatments before finally finding Aubagio and my current MS remission.

    I’ve gone from walking on two feet, to using cane, to using walker with portable c-pap machine to get enough air in. Then back to where I am now on my two feet; I do continue to have trouble with one or both feet not knowing where they are; which is reason used cane to have connection to ground and know where I was.

    I could go on with all my physical problems that are still disabling, but you get the idea. Life’s not been kind, so, thank goodness I have a positive attitude. Otherwise, if I let MS win, I would have been in a wheelchair a long time ago. Attitude has everything to do with it, you do better if you don’t feel sorry for yourself. I’m sticking to my mantra “I have MS, it doesn’t have me.”

  • Watermelon
    2 years ago

    I love the Positive Attitude part. I believe that is what keeps me going. When I am able to look at the BIG picture, I see that I am blessed. I have my struggles, I am not a victim. I am able to live my life with a smile. Life is about choices and lessons we receive from those choices. For a long time i was not willing to let anybody know my struggles. Today I am not afraid to tell people my truths.

  • DVORA
    2 years ago

    DEVIN — I AM BRAND NEW HERE AND HAVE ALREADY CONFUSED MYSELF —
    MOST OF MY PROBLEMS HERE WILL BE DUE TO COGNITIVE CHALLENGES WHICH ARE A COMBINATION OF MS – LACK OF BALNCE CAUSING MANY FALLS AND MUCH BRAIN ISSUES AND UNFIXABLE BROKEN BODY ISSUES —

    HERE IT WOULD BE IMPORTANT TO USE CAPS AND I KNOW THAT IS DISTRESSING ON THE INTERNET — MY VISION IS NOT FIXABLE — IF THIS IS A PROBLEM PLEASE LET ME KNOW AND I WILL CONTINUE TO READ BUT WILL NOT TYPE — AND WILL NOT BE OFFENDED —

    I HAVE THANK G-D LIVED OVER 70 YEARS AND DO NOT OFFEND EASILY — ALSO IF WORDS ARE GOING THROUGH MY CURRENT BRAIN THEY DO TEND TO COME OUT OF MY MOUTH AND FINGERS —

    ALSO — IF YOU ANSWER MY POST — HOW WILL I KNOW ?

    THANK YOU DEVIN –….. BE SAFE AND WELL ….. DVORA

  • DonnaFA moderator
    2 years ago

    Hi Dvora, as our community rules do not permit the sharing of personal information, I had to edit your post to remove your personal email. Please know that when Devin answers your post you will be able to find it here. And the caps are no problem, we’re glad your here and hope to hear more from you 🙂 -Warmly, Donna (MultipleSclerosis.net team)

  • DVORA
    2 years ago

    I THANK YOU FOR YOUR STRONG SUPPORTIVE WORDS AND ATTITUDE — PEOPLE THAT I THOUGHT CARED MOST FOR MY HEART MANY TIMES HAVE SAID THE MOST HURTFUL THINGS AND THAN WERE OFFENDED THAT I DID NOT APPRECIATE THAT THEIR WORDS WERE ONLY BECAUSE THEY CARE SOOOO MUCH —
    SOME PEOPLE ARE JUST NEVER GOING TO UNDERSTAND — THAT IS THEIR PROBLEM — NOT YOURS . YOU DO NOT NEED TO ACCEPT THE KIND OF LOVE AND CARING — IT WILL NOT HELP YOU !

    MAY G-D GIVE YOU STRENGTH IN YOUR VERY REAL STRUGGLES — AND MAY YOU BE SENT REAL LOVING PEOPLE INTO YOUR LIFE …. DVORA

  • jackiej
    2 years ago

    I’m so glad you say so many things I don’t know how to say.I think more often than not people mean well.I have encountered on purpose attitudes trying to strangle me in an already trying situation.Leave those people behind, if they are relatives you have limits.People have limits.I have a husband who refuses to let my body scream in pain some days because HE is insecure.OK if yoru arm was broke in a cast etc…you might have to ask for help to write your name.People get that, they don’t say..oh arm, you aren’t broke go ahead and pick up that barrel.Positive affirmation is one thing, broadcasting to the world I wont let cancer win, Als win etc trying to uplift someone(or yourself) doesn’t accept the person as a whole.In a sense it can mean the opposite cry for help…..I feel so darn bad I’m letting this win.It is ok to know you hurt etc and say it.
    How to accept this is me, right now like it or not is being a person.I hate some days!I love most.We like to think we have control and we “tri” as in Tri-umph. but usually there is the UMPH first in TRI-Umph in most diseases.I have MS and ended up at 120lbs normal with a quad bypass.I thought, oh might not die from MS! I’m just saying It is what it is.Learning is a pathway.When I encounter a person who negatively says, you look and move so well, your doctors wrong here go to this one…I say, Lots of good lookn people at the cemetary and they leave me alone.Keep your oils vit and sayings, if you think you can change this.Honest advice, I will ask for it.Accepting limits may be embracing less stress and quality of life.

  • dn11gt
    2 years ago

    Thank you. This brought tears to my eyes because it is exactly how I feel all the time when somebody says this. Again, thank you so much for writing the article.

  • Devin Garlit moderator author
    2 years ago

    Thank you dn11gt, very much appreciate you taking the time to write that!

  • Nomdeplume
    2 years ago

    OMGosh, thank you, Devin. I hate that expression, “I have MS but MS doesn’t have me.” It is SO naive. I cringe when I hear it.

    I think those who use it are grabbing onto this catch phrase for strength. They want to identify with it. It is a convenient way to put on a brave front. I’ve only heard it used by the newly diagnosed or those fortunate enough not to have disease progression. I haven’t had another MSer use it to shame me. Not yet anyway.

    It seems to me that some pharmaceutical company coined the phrase? Is that correct? I guess it doesn’t matter, but I always find that their marketing tactics seem so out of touch with the reality of MS. I never can identify with the personae they create to represent us patients (sticking their tongues out, throwing paint, etc.).

  • Devin Garlit moderator author
    2 years ago

    Thank you Nomdeplume! Always nice seeing someone who feels the same way I do!

  • chalknpens
    2 years ago

    I love reading your posts, Devin. Thank you for clarifying what many of us are feeling.

  • Imascatterbrain
    2 years ago

    You are kind. Those who say things like this remind me of high-school;
    the popular girl saying that, if I used shampooX, my hair “could be shinier.”
    With the intention being to point out how beautiful hers is.
    Sadly, I was better, mentally and emotionally, at being above this BEFORE I had MS than I am now…………

  • karen
    2 years ago

    Thank you! I’ve never understood those who used those terms.

    I have MS. I have good and bad days. I feel fortunate for all I’m capable of and know this may not last so I’m going to live life to the fullest. I love life. I can’t say if I’ll always feel this way.

    I don’t feel there can be a comparison because it affects each person differently to a different degree. My heart goes out to those currently struggling.

    Thank you, I don’t feel so awkward in my thoughts now.

  • cbeach87
    2 years ago

    I agree with you wholeheartedly, Devin. I cringe every single time I hear the phrase “I have MS, but it doesn’t have me.” I functioned fairly well for the first 10 years after my diagnosis in 2000 and probably chirped a similar phrase in those early years when I was blissfully ignorant of the madness this beast was about to ravage on me. So I do have to cut today’s ignorant chirpers a bit of slack, I was one of them too. I even had the audacity to say to myself this morning, “It’s a mind game. You have to set your mind to not be embarrassed by yourself and to walk with confidence. Nobody else can give that to you. “ Admittedly, I did get up and shuffle confidently to the bathroom, but then the reality of my barely functional right side reminded me just how little control I have over this disease. So I really needed to hear your reminder that just because I struggle, I’m no less strong or tough than those who believe MS doesn’t “have them.” We are strong – thanks for reminder, Devin!

  • Devin Garlit moderator author
    2 years ago

    Thank you cbeach87! We are most certainly strong! Accepting that you have an issue and have to adapt it doesn’t make you any less, if anything, it means you are stronger. You’re right, it very much is a head game. I confess, it’s a game I don’t always win. The thoughts in my head, in many ways, are my biggest obstacle. Sometimes realizing that helps though. We can’t control a lot with this disease, but remember that we can always control how we approach it. My body may not always work right, but so what, what in this world does work right all the time? Just have to adapt to and carry on, that’s what the truly strong like us do!

  • watergir1
    2 years ago

    I appreciate the honesty in your posts. And I can totally relate, like right now I’m lying in bed rather than getting up because in my mind I can run all over the place but once I stand up, I have to face that my feet don’t move the way I want them to! I don’t think anything I do anymore is “MS doesn’t have me”. I thought that the daily injections I used to take were just daily reminders that “there’s something wrong with me” but now I take the capsules along with my vitamins each day, and I still feel that way. My dad has cancer, and just underwent surgery, so I know there are so many worse things to have, but I’m so tired of MS!

  • Devin Garlit moderator author
    2 years ago

    Thank you watergir1! MS certainly has me, but I don’t see it as a good or bad thing, it just is. We’re all dealt some sort of challenges it seems, and ours is MS. Just means we have to adapt a bit! Thanks for commenting, I hope your dad is doing well!

  • 4rcmfg
    2 years ago

    Your article was spot on. I have found on FB that there seem to be competing groups of those who have MS. Can’t we all just get along since we have the same disease and are no longer in High School. Yes, cliques will form and Annual Meetings will be planned, but it seems not everyone is welcome. Most recently I was talking with a guy who also has MS. Interestingly he didn’t want to pursue anything romanticly because I was slightly worse my MS than him. I found that amusing that I was actually MS Shamed? I’m sure I’m not the only one that has happened to.

  • pmdpeace
    2 years ago

    4rcmfg,
    I had to reread your comments to Devin several times. I wasn’t sure if I was misreading your post or if it was the dyslexia I’ve developed. It was neither. It’s unimaginable to me that a guy with MS would discriminate against a woman with MS by saying such a thing. What comes to mind is my relief for you, in that his true self was evident immediately. You didn’t invest in a relationship to find out the ugly truth later. Shame on him!!! To me, your amusement shows that you have a great attitude. Non-MSers have tried to shame me but not an MSer, to my knowledge. If an MSer did… I was in a cog-fog & didn’t get it. We ALL need to be compassionate!

  • Devin Garlit moderator author
    2 years ago

    Thank you 4rcmfg! It goes against common sense, to me anyway, that we can still have these cliques in a community of people with so much in common. I suppose it’s human nature. I am baffled by the guy you mentioned! I feel like he is setting himself up for some karma there. I would he feel if someone without MS said something similar to him? Some people might think otherwise, but I can see a lot of appeal in seeing someone who also has MS. Someone that can truly understand what it’s like could make for an amazing connection, a connection so few of us have. Thanks so much for reading and sharing your experience, very much appreciated!

  • Sillyme
    2 years ago

    Whoa! I’m still recovering from my first painful/scary MS episode. I was diagnosed in 2002 with symptoms (numbness and balance) as far back as 1990. I immediately went on a strict gluten and casein free diet and found a doctor who would prescribe LDN – and became THAT person, who secretly thought that most people would be fine too if they just educated themselves and changed their lifestyles. I offered LDN info to everyone I met with an autoimmune disorder (some of them avoided my thereafter). I rarely mentioned my MS and pretty much denied that it was an issue in my life. I think I’ve always been an empathetic person but I’ve had very little real pain in my life. I’ve never truly appreciated the strength and courage many people around me need just to get through the day, let alone function. I’m very ‘drugs as a last resort’ kind of person but at the peak of my pain and sleep deprivation I would probably have taken anything available to knock me out. Living that way was unthinkable.
    I now think about the people I have unconsciously avoided because their constant issues were a downer. Though getting sucked in isn’t usually helpful I pledge to find ways to be there for those people even if I can’t solve anything.

  • Devin Garlit moderator author
    2 years ago

    Thank you Sillyme! My apologies for the delayed response! Thanks for reading and sharing your thoughts, I really appreciate that!

  • valentina.holmes
    2 years ago

    Really brave to share this and I agree with all that you said. But just a note: maybe this kind of answer with positive sentences like ““I refuse to let MS win” or “I have MS but MS doesn’t have me” or “ I don’t let MS control my life”” its just a not-so-good/gross way to say “Hey, I’ll not give up, don’t give up you too”.

    I think that this thing of “fight” with any disease can be good if you are ok (“Oh, I’m winning!) but not so good when you are not ok…No one deserves to feel like a loser or weak person because of his/her health, right?

    I just prefer the ideia of not giving up. Not stop taking care of me and living my life when things are good or bad. 😉

  • Devin Garlit moderator author
    2 years ago

    Thank you Valentina! I agree, having a fighting attitude is great! I’m just concerned with the way people say it to others, who are struggling. If not worded correctly, it can make others feel worse than they already do. I’d rather someone encourage them and instead of discussing themselves, remind the person that they are both fighters and will get through this!

  • Diego
    2 years ago

    Great post Devin. I was diagnosed with MS in December 2014. And it has been a struggle ever since then. It’s not just the myriad of physical issues, but the psychological ones as well. I appreciate hearing what others go through with this disease because it shows me that we are all struggling with MS in one way or another. If anything, having something in common such as this disease should bring us all together and give us all a common bond that unites us and binds us. Having empathy is something that we should all practice every day. We all have to get through our days as best as we possibly can and support each other always.

  • Devin Garlit moderator author
    2 years ago

    Thank you Diego! Very well said!

  • Lisa
    2 years ago

    You are so right. I would never say that to someone else with MS. I was diagnosed in 2011 and I notice evey day how this disease affects me. I know I will never be the same as I was before the diagnosis. Since I don’t know how the disease will.affect me from day to day, I can’t understand why I would want to make myself feel better to other people with this disease. I think most people need to understand my MS is different than your MS but the emotional feelings are the same. Everyone one has good days and bad days. We need to celebrate the good days with each other and be supportive of the bad days.

  • Devin Garlit moderator author
    2 years ago

    Thank you Lisa! The snowflake nature of MS creates so many problems within our community. It can be hard to remember how different we are. Thanks so much for reading and commenting, it’s always appreciated!

  • Micah
    2 years ago

    You also have to remember all of the sides of MS. When someone says “I’m not going to let MS win”. They aren’t always talking about MS it’s self. Most of us that have it have come to the realization that there isn’t much they can do.
    They are talking about the crushing depression can come with it. The term is saying that i’m going to get up this day and do my best to live as full of a life as possible. I might not be able to do everything or even anything that I could do previously, but i’m going to find a way to contribute to my life and the lives of my family.
    As someone that has battled depression for a large part of my life. Finding reasons not to just give up are a daily struggle. Fighting these thoughts can be extremely overwhelming even when on all the antidepressants.

    -Micah

  • Devin Garlit moderator author
    2 years ago

    Thank you Micah! Believe me, I wish there was an edit feature on these comments too! Your points are exactly why I wrote the article, when someone is venting and another person suddenly exclaims that they don’t let MS beat them, that can have a profound impact on the person venting. We never know each others mental states at any given moment, and we should be careful not to upset others at the expense of boosting ourselves up. Thanks so much for taking the time to read and comment, very much appreciate it!

  • Micah
    2 years ago

    I was really hoping I could go back and edit my post. My grammar was horrid.

  • Sharelo
    2 years ago

    Well said. It’s been almost a year since I had my first big flare, and joined the ranks of those who know we have MS.
    I take my meds every day, starting modifying my diet, and doing yoga. I also work a full-time, stressful job; raise a 15 year old; and help my husband battle his own disease (Polymyositis… look it up. It isn’t fun either. )
    I know I’m battling. Am I winning? This isn’t what winning should feel like.

    I know I’ve met some incredible people on social media, each with their own story. I give each of them credit for doing whatever they can do. If running marathons is their thing, they should. If sitting up in bed and playing with their toddler is what they do, they are winning too.

    All we should be doing is supporting each other while we fight.

    Because, in my mind, my flare was like a nightmare. I didn’t chose to wake up in that nightmare, and I won’t choose to wake up in the next one. But if I do, does that mean I wasn’t battling enough? No way. That’s the monster we fight.

    Thank you for writing that article. Very well said.

  • DVORA
    2 years ago

    I HAVE BEEN READING THIS THREAD AND WANTING TO COMMENT BECAUSE THIS IS MY FIRST VISIT HERE I FIRST WAS TRYING TO GET A FEEL FOR THE PREVAILING ATTITUDES — DO I BELONG HERE ? — I HOPE SO — I HAVE HAD A POSITIVE FEELING ABOUT EVERYTHING EACH OF YOU HAS WRITTEN AND THE REALITY AND HONESTY OF YOUR REMARKS —

    I CAME SEARCHING FOR HELP WITH A PARTICULAR PROBLEM — IF IT IS OK I WILL CONTINUE TO READ TO SEE WHERE ON THIS SITE IT WOULD BE APPROPRIATE TO BRING UP —

    IS THERE A FAQ PAGE BECAUSE I DO NOT KNOW THE RULES HERE EXCEPT THAT THERE IS A VERY HELPFUL MODERATOR HERE ?

    THANK YOU IN ADVANCE FOR READING THIS — AND FOR BEING HERE —
    BE SAFE AND WELL …. DVORA

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Sharelo! If anything, I hope that people will remember to take into consideration that we are all different and should consider other’s state of mind when we talk to them. Thanks so much for commenting, it;s very much appreciated!

  • teddy s.
    2 years ago

    Devin,

    You are 100% correct on this. Based on my experience, (I will reference a previous post of yours here), many people who feel they have “beaten” MS talk about their faith, and how it has helped them overcome their condition. To those, I say: Wait a while, and let this thing bite you in the ass, and hard.

    As pessimistic as this sounds, I don’t wish to discourage those from having positive thoughts. But don’t turn a blind eye to reality. MS is an unrelenting, unforgiving enemy; which shows no signs of mercy. A positive attitude can make life more bearable for you, and make life easier on those who care for you, but just because you think you are dealing with your situation better than others does not mean you should disparage them. Although I am a non-believer, I do believe Karma can be a real bitch, so beware.

    Please, let those suffering from this insidious disease deal with it on their own terms, even if they are not your terms.

  • Devin Garlit moderator author
    2 years ago

    Thank you so much Teddy! You understand exactly what I was trying to say!

  • Poll