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I have MS and MS does sort of have me

I have MS and MS does sort of have me

Recently, in preparation for a World MS day article, I was asked to contribute something that hasn’t changed for me since I was diagnosed. It’s a great article and shows that when you have MS, that’s not all you are, and that it isn’t your whole life. I of course overthought the question and became stumped. I ended up responding: “I’m not really sure I have anything that hasn’t changed since my diagnosis 16 years ago. Maybe my smile. It feels like everything else has changed over time because of it, but that doesn’t necessarily mean those changes are bad. I’d say at the end of the day, my MS has made me a better person”. Maybe not exactly in the spirit of the article, but it was how I felt. As I was giving it more thought, I kept thinking of one of my big annoyances, the very popular phrase “I have MS but MS does not have me”.

The popularity of this slogan will probably garner me some negativity at first. After all, countless people label their stories with that motto, there are t-shirts adorned with it, and there are even signs you can buy with it. I’ve even seen it on people’s email signatures. Please, hear (er, read) me out first. I do understand what people are doing when they use this phrase. I get that it’s a way of fighting back, a way of showing that you are maybe even winning the battle. I also get the need to be positive (I do think that’s important). I also know that with the snowflake nature of our disease, staying positive all the time is a lot easier for some than it is for others.

I suppose it’s those others that I am taking some sympathy with here. I’ve had numerous folks mention to me in comments and in messages that, at times, there seems to be a move towards being too positive, which can be very off-putting. For every MSer out there running marathons, completing the latest fad obstacle course, and proclaiming how their MS doesn’t have them, there is a person seeing that as they are stuck in a wheelchair or struggling to move around with a cane or walker. I don’t think it’s hard to imagine the effect that can have on someone. It’s not that those in the latter category begrudge those who are having an easier (ok, not easier, just different) time with the disease, it’s that it obviously can make a person angry and sad and wondering, “damn, why not me?” There are an estimated 2.3 million people with MS in a world of about 7.4 billion people. I mention this to illustrate that even though our demographic is small, it can seem even smaller to some people because of the way the disease affects us all differently. That’s pretty tough when you have a disease that already causes a lot of depression, loneliness, and jealousy.

I admit, I have seen both sides of this. In my early days of MS, when I’d have an exacerbation and then recover, seemingly with little lingering damage, I was very active. I was even one of those with MS that ran marathons. However, after 16 years of cumulative damage, I now find myself on the other side of the fence. Now more limited (though not nearly as much as some) in what I can do, I can finally understand why some get upset at the overwhelming positivity that can seem forced down their throat.

I’m now at a point where, as I mentioned in my quote earlier, I can’t think of anything about me that MS hasn’t had an impact on. That’s not me being negative, that’s just me understanding that this whole thing has been a journey and it’s shaped me. I don’t want to say MS has me, but I will say that MS and me are in this together, we’ve impacted each other. There isn’t a separation between me and the disease. I guess that’s the thing about that phrase that gets to me the most. MS and I have each other, but that isn’t necessarily a bad thing. I have a disease and it affects my life. That isn’t negative, that’s just how it is, that’s just my reality. Does it “have me”? Well, sort of, MS is a part of me. It’s made me who I am (16 years of anything will do that) and you know what, I still like me. Is it the best thing to ever happen to me, probably not, I’d love to still be able to run and to play hockey and to sit outside on a hot day. Would I rather not have the disease, sure. But that doesn’t mean that me being accepting of it is and adapting to it is negative.

I’ve probably rambled enough. Now I’m not saying people should stop doing their fun runs or stop proclaiming their victories. Please go on doing that. At the end of the day, I’m happy for you, even if I’m a tad jealous. I know this may seem like I’m missing the point of the “I have MS but MS doesn’t have me” motto, but I promise you I’m not. I know it may seem like I’m nitpicking some language (and the world already has too much of that). I just want to say that I have MS, it’s part of my life. I accept that.  I keep fighting it, but until there is a cure, I’m really just adapting to it, I’m just living my life (and in reality, I don’t need a cure to stop it, I need one to regrow myelin to have any real effect on my life). Does MS define me? Not totally, but it is one of the many things that when put together defines me and makes me who I am. And that’s ok. So to everyone that feels impacted by their chronic illness, whether it be MS, or lupus, alzheimer’s, cancer, diabetes, depression, fibromyalgia or any of the large list of terrible things out there, I just want to say, it’s ok if you don’t feel you are winning, but that doesn’t mean you are only losing either.

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

  • Vagirl
    3 years ago

    “I have MS and after 36 years MS does has me right back” I tend to think in lists:

    Advanced MS Dates 1980-2016 brain stem/vagus nerve, treated with high dose pulse steroids x2 1999-2013 left with gastroparesis and critical weight loss ~30%

    Early Sept 2016 – added autonomic functions involvement with labile hypertension and pulse rate problems. My neuro told me he “has an office practice”. It’s getting scary. I need more information about this permanent complication. I am an RN only 67. Thanks for listening, posting for the first time…

  • Devin Garlit moderator author
    2 years ago

    Thanks so much for sharing Vagirl! Appreciate you taking the time to comment!

  • stillstanding
    3 years ago

    I also never liked that saying. I do my best and try to stay positive but MS has me by the throat.

  • Angela OConnor
    2 years ago

    Still standing, I too dislike the pithy, cheerful motto.
    I’ve always, since childhood at least, been both positive and critical. That phrase gets me more than it should . Like whatever is the point of that phrase. To prove that you can memorize ads, or TV commercials? I still know all of the words to the theme song of The Brady Bunch, which has more meaning for me then the MS jingle.
    And if my sister says it to me one more bloody time…Why I autta’!
    It’s not pithy. It’s just annoying.
    Sunshine signing out!

  • Devin Garlit moderator author
    2 years ago

    Thank you Angela OConnor!

  • Devin Garlit moderator author
    3 years ago

    Thank you for reading and sharing your thoughts, it’s always appreciated!

  • Carol
    3 years ago

    I respect you immensely for saying that “MS has you”. I do not care for the cliches and platitudes that are often shared about MS or other difficult, disabling, progressive diseases that are out there. I cannot say that MS has made my life any better in any way, shape or form. I had my first MS “event” when I was 34, finally diagnosed at 48 and am now 59.I cannot say that MS has made me “stronger”, as I was already a very strong person. I had an ill father for most of my life, who died when I was 14. My mother was diagnosed with cancer when I was 18 and she died when I was 19. I put myself through college and was always an independent person. My husband and I have been married for over 33 years and we have a loving, strong relationship, but it was a good relationship before I got my diagnosis. I feel, often times, that articles about MS, cliches,etc. often stress how “strong” we feel, when we all know, on many days, we do not feel “strong” at all. And that is okay. I will not allow anyone to try to make me feel guilty when I admit that I do not feel strong (any more), MS does have me and sometimes it has me by the ba–s. (I don’t have ba–s, but the “saying” fits here. We do not have to feel “strong” every day. No one feels “strong” every single day-it’s just not possible. We are humans. All of us are getting up each day, and just trying our best to have some sense “of the self we used to be”Some days are a little bit easier than other days. Some days can be just awful. I do not try to “look happy”. I am not trying to be “happy”. This goal is not what we need to be aiming for. We need to do things that we know will bring about happiness. MS does have me. This disease has changed my life in hundreds of ways-none positive. But that is okay. This is who I am. I will keep getting up each morning and I will continue to be “me”, as that is the only person I can be.Would I love to not have MS? Of course, but I do. Thank you for writing your piece.

  • DonnaFA moderator
    3 years ago

    Hi Carol, thanks for sharing your wise and lovely thoughts.Sometimes we all need a reminder that it’s okay to feel exactly how we feel. We’re glad you’re here. -Warmly, Donna (MultipleSclerosis.net team)

  • Jennine
    3 years ago

    Thank you! This article articulates how I feel everyday. I am a positive person, but my MS is part of me. Yes it has changed my way (quality) of life. I am glad you had written this article which I will be sharing with others to help them understand me.

  • DonnaFA moderator
    3 years ago

    Hi Jennine! Thanks for sharing your thoughts. We’re so happy to hear that you enjoyed the article. We’re glad that you’re here! – All Best, Donna (MultipleSclerosis.net team)

  • sarah
    3 years ago

    Absolutely loved reading this!! So Very True!!! Yes, we all try too be happy & wear our Happy faces because we don’t want the sympathetic looks or comments.
    Keep writing……..

  • Angela OConnor
    2 years ago

    Sarah, I wouldn’t a little sympathy! My guy says of my family(siblings) that they seem me looking good ( I am good at doing my hair and makeup) that the fact that I have MS doesn’t show…it is in fact mostly an invisible disease… except when I’m walking my dog with my walker!
    Sympathy, compassion I could use.
    I’m so glad that I found this site again. It seems like people on here have had MS for a while.
    Iv’e had MS since 96′

  • Devin Garlit moderator author
    3 years ago

    Thanks Sarah!

  • DonnaFA moderator
    3 years ago

    Hi Sarah! Thanks for joining the conversation. We’re so glad to hear that the article resonated with you. Thanks for being part of the community. -All Best, Donna (MultipleSclerosis.net team)

  • Azjackie
    3 years ago

    Thank You! I also have wanted to hear that. I know like Julie, Cari, Devin, all of us, MS does have us. It’s who we are 100% of the time. It does not mean it takes over completely but by golly it takes as much as 98%. We work with it because we have to.

  • Devin Garlit moderator author
    3 years ago

    Thank you Azjackie!

  • Cari
    3 years ago

    I have always HATED that statement, “I have MS, but MS doesn’t have ME!” I have found it to be trite and uninteresting.

  • Devin Garlit moderator author
    3 years ago

    Thank you Julie and Cari! It is always nice to know others feel the same way. That phrase seems so popular, I was really worried about some backlash from folks! Thanks so much for reading and sharing your thoughts!

  • Julie
    3 years ago

    Thank you! I have wanted to say that very thing for the longest time but I thought I was the only one that feels that way.

    Yeah, it sort of does have me. It reminds me every morning when I get out of bed. I’m reminded when I have to climb the stairs. I’m reminded when I put my clothes on, when I get dressed when I try to remember what I had scheduled for the day. Some days I have to remember what my grandkid’s name is. And on and on. If that isn’t the definition of “have me”, I don’t know what is.

    I don’t have to give in to it every time but it is in my life.

    Good article.

  • PChiker
    3 years ago

    Loved your article and think it was spot on! It doesn’t exactly have me but it is a big part of me and it is always there, lurking in the background of every little thing I do or can’t do that day.

  • Devin Garlit moderator author
    3 years ago

    Thank you PChiker! It’s always nice to hear others feel the same way!

  • OliviaJ
    3 years ago

    I reacted badly when I began this article. I hate it when people say they have MS but MS doesn’t have them. I think they should add the word ‘yet’ to that little motto. Most of us end up with progressive MS even if they weren’t diagnosed with progressive MS (as I was, with Primary Progressive) at the outset. But the article went on to redeem itself for the most part. I agree there is a large list of terrible things out there. I’m glad of 2 things right now: that I don’t live in a country that may elect a fascist for a president; and that I don’t live in Syria.

  • Devin Garlit moderator author
    3 years ago

    Thanks OliviaJ, I see that phrase that MS doesn’t have them so much and with the daily difficulties I have, I had to write something about it. I know there is a massive movement to be positive by a lot of people, but I try to be realistic. For many of us, MS is certainly a big part of our lives. I accept that and there is no need to deny it. Thanks so much for reading and sharing your thoughts, it is always appreciated!

  • giraffe516
    3 years ago

    Great article. Yes unfortunately Ms does have me. It impacts every single aspect of my life. Showering getting dressed driving walking working personal relationships even taking care of my dog. I try and keep a positive outlook but can’t help to wonder what more it will take..there isn’t much left!

  • Devin Garlit moderator author
    3 years ago

    Thank you giraffe516, we can still be positive and admit that the disease is a big part of our life. In many ways, I think it makes us stronger people. The phrase MS Warrior is a good one, because that’s what the disease has made us. Thanks so much for reading and commenting!

  • loftsguy
    3 years ago

    Devin I say it like this. I Can’t deny MS but I can defy it. Not letting it control every decision I make. Although I have learned to say no and if I want to have a large time like attending a concert. It takes days of preparation. What I miss most is being able to be spontaneous. Saturday morning wife and I bored. Pop up, field trip. Go where? Decide when when we crank car. N S E W

  • Devin Garlit moderator author
    3 years ago

    Thanks loftsguy! I miss that spontaneity too, I am very much someone who now need to have things planned out! I see it all as adapting and people have to adapt to all sorts of things as they get older. I also think having MS has made me a bit of stronger person, so I don’t think it’s all bad. Thanks so much for reading and sharing your thoughts, I love it when folks join in the conversation!

  • Mariella
    3 years ago

    Thank you for the article Devin. I don’t know what to say, just that I’ve been diagnosed with it 12 years ago. Trying to be positive. Just doing as much as I can, because really we live with uncertainty right? Just yesterday I got some vision episode never experienced before. I called my Dr who referred to it like “ocular migraine”. Little scary. Today I was back to exercise just until I can. Not because I don’t have empathy to the different stages in our decease but because I still can do it. 🙁 :). We all could at some point. Then we couldn’t maybe.

  • Devin Garlit moderator author
    3 years ago

    Thanks Mariella! One thing I try to remember is that life is full of uncertainty for everyone, whether they have MS or not. If anything, I think having MS for a number of years like you and I have has probably made us better at being able to deal with that uncertainty better than those who don’t have the disease. Throughout all our problems, remember that our experiences with the disease have made us stronger too! Thank you for commenting, it is very, very much appreciated!

  • Elsa Elaine
    3 years ago

    Good article! I’ve lived with MS for the past ten years and it’s been relatively “kind” to me. That said, I do get tired of the “I have MS but it doesn’t have me” mindset. No, it doesn’t “have” me exactly,….but it certainly has become a major factor in my thought processes when I exhibit new symptoms. “Is this an MS thing?” is the first question that crosses my mind.
    Also, I am very mindful many of us are not fortunate in terms of our MS progression. I wince when I see stories or ads about MS people summiting Everest or running marathons. While it’s great for them, I think it’s incredibly insensitive to those who are reading or watching these stories from their wheelchair. Can’t those of you who are enjoying the luxury of stupendous health and athletic prowess, put yourselves in the shoes of those MS patients who are, through no fault of theirs, immobile, in pain, without vision, or victims of the myriad tragic faces of this disease. Please, look beyond your fantastic feats and think about how others of us might feel.

  • Devin Garlit moderator author
    3 years ago

    Thank you Elsa Elaine! Those stories and ads are certainly rough for a significant portion of the MS population to see! I think it’d be better to show the full spectrum of people, Everest climbers, those in wheelchairs, and those in between. One of the main things I wish people would understand about the disease is it’s snowflake nature and that we can all be different! Thanks so much for your comment!

  • sherry3714
    3 years ago

    Thank you so much for I wonderful article! I completely agree about that slogan. Your article lifted my spirits!

  • Devin Garlit moderator author
    3 years ago

    Thank you sherry3714! Very happy to hear that!

  • Sheryl
    3 years ago

    This was very refreshing to read. I am tired of having a guilty feeling because I hated the “I have MS but it doesn’t have me” qoute. You are right MS and I have each other and having MS has shaped me of the last 16 years. I am not saying for good or bad (some of each) but it definitely is a player in my life and it is denying part of what I am to ignore that. So thank you for the permission to say “I have MS and I live my life with it” perhaps someday it will be sent back home.

  • Devin Garlit moderator author
    3 years ago

    Thanks so much for reading and commenting! I’m very happy to see people understand what I was trying to convey!

  • TracyBelleLee
    3 years ago

    This is such a relief. I have always thought I was a failure at MS because I don’t know how to find “positive ways MS impacted my life” or discovered some talent or passion I didn’t have before. My mom used to say “so & so has MS but she just doesn’t let it stop her”. I guess I should have the power to not let it stop me but I have some spiritual weakness or a loser outlook. I lost who I was and despise the new me. When I was diagnosed in 1999, it was an overload of “inspiring” people who do triathlons and fundraising. My career as an attorney never began since I went blind in both eyes 12 days after being sworn in. Everyone said “you’re too smart to have to worry about brain damage!”, as if intelligence was an antidote to demyelination or I could avoid damage by using smarts. Now I can’t remember recent events, simple words or how to drive the right streets to get somewhere I have gone my whole life!

  • Devin Garlit moderator author
    3 years ago

    There are many people that see all of the people doing marathons and similar type events and that’s all they see. They don’t realize how varied and snowflake like the disease is. We are all different. So you certainly shouldn’t feel bad or like a loser. There are plenty (more so than not) of people like you and me who aren’t out there doing a lot of crazy events. And it’s not because we are losers or not positive enough, it’s because our course for the disease is different. As for cognitive issues, I can’t sympathize with that too: https://multiplesclerosis.net/stories/cognitive-dysfunction-scary-invisible-fight/ Thanks so much for commenting and never, ever think it’s your faulty that you aren’t doing those thing!

  • abuteau
    3 years ago

    I completely 100% agree. Although I’m 29 and have only had MS 5 years, it came on quickly and aggressively after the birth of my daughter. While I’ve always tried to keep a positive attitude and outlook, I also recognize that MS is a big part of my story. It has influenced several major life events since my diagnosis (buying a house, we went with a single story so I won’t have to worry about stairs in the future), budgeting (ran into insurance issues and had a bad rebound flair when I couldn’t get my Tysabri in time) and family planning (I had to see a high-risk OB and have NICU present for the birth of my son because I had to stay on Tysabri thoughout the pregnancy, and he’s completely fine and perfect by the way, but they were there as precaution). So yeah, I have MS, and it doesn’t rule my life but I do have to accomodate it. It’s still a life worth living though, for sure. 🙂

  • Devin Garlit moderator author
    3 years ago

    Exactly! Thanks so much for commenting!

  • Tess
    3 years ago

    Yay Devin! I have the Monster and I’m tired sometimes of putting on that fake smile just to make everyone else happy. Walk in my shoes for 1 hour, then let’s see your smile.

  • Devin Garlit moderator author
    3 years ago

    Thanks Tess! I’m glad the article resonated with you!!!

  • Lisa M
    3 years ago

    I have always hated that saying…..I would say, BS, it DOES have me! I keep smiling and I keep trying but it still “has” me.

    great article

  • Devin Garlit moderator author
    3 years ago

    Thank you! And thanks for reading and commenting!

  • Tess
    3 years ago

    It is a great article. I loathe when people say that. I also hate when they say “don’t let MS define who you are”. Especially the people who don’t have it. It is part of us just like the color of our eyes, hair, freckles etc… Sure, you can alter the first two, but it’s just a facade. MS is with you all the time. It may take a break once in a while, yet it’s still there like a snake just waiting to strike. I always try and stay positive and I do fight the symptoms, but you know what folks…? It always makes me pay the price. Notice that I did not say WINS? It’s because it already has. Why?…because there is no cure…Yet.

  • mmcclaskey
    3 years ago

    I always felt those that can should and those that can’t shouldn’t. Hard to deal with that I am in the can’t group. MS has made me different person, some better and some worse, just different. Great read!

  • Devin Garlit moderator author
    3 years ago

    Thanks so much for reading and sharing!

  • tfs
    3 years ago

    I love your posts. I agree with the preposition that MS is part of me – perhaps a part of me that will help me squarely face areas of my life that I chose to deny. I was always the strong one, fixing everybody and every thing. Now I need to stop this unhelpful behavior, and face the reality of my own life. I can honor my loved ones by not controlling their lives. Finally, no more running.

  • Devin Garlit moderator author
    3 years ago

    As they say, you can’t help someone if you don’t help yourself first! But I know exactly how you feel. I try to look at it now, that me taking time to make sure I’m in a good condition, is something those people would want anyway. Thanks so much for reading and commenting.

  • Sue
    3 years ago

    Yes, you have this right. At a certain point , when m s has progressed, it’s kind of annoying to read that you, me, should take control.
    I’m in a wheelchair . Luckily (lol) I’m a rightie and my left side has been affected . I need my right hand to move my left side. I have a hard time dressing, getting into the bathroom, dressing, getting in and out of the car, the pool, the bed, etc.
    I can’t get up and just walk a few steps if my husband isn’t close by. If I fall, it takes a toll on my husband . If he can’t get me up, he has to the fire department , again. M S has both of us!
    I don’t drink anything before getting on the plane and need to bring a commode for the accessible bathroom in the hotel. I usually order pasta in a restaurant (no cutting). I put my phone on speaker so I don’t have to hold it.
    I’m 64, but look and feel younger and much older. I have an easy smile and my cognitive function is ok. When 80 and 90 year olds see me trying to get in the pool or at the theater, they offer me help, hold the door, pick up my pocket book.
    I will try anything . That means that I am still hopeful.
    It’s so hard to be in control, when this disease seems to be on auto pilot.
    Thank you for sharing your trip. It’s not quite as scary when you know you are not alone.

  • abuteau
    3 years ago

    Your outlook is beautiful 🙂 Thanks for sharing!

  • Devin Garlit moderator author
    3 years ago

    Thank you for reading and sharing your story. You point about ordering an item where you don’t have to cut really hit home for me. My right side (I’m right handed) is my worst side, my left hand is also deformed from a birth defect, so trying to cut anything is tough and can feel super embarrassing when I am out (or even alone). You are right though, this journey is not nearly as scary knowing that I’m not the only one going through it!

  • kmonnig
    3 years ago

    I am so glad you wrote this. Its just like you have been reading my mail! Hahaha. I think a lot of us feel the exact way you do for sure. Thank you

  • Tess
    3 years ago

    We sure do!

  • Devin Garlit moderator author
    3 years ago

    Thank you!!!

  • Kathy P
    3 years ago

    Thank you! This is so true. Love your article. Back in 1999 when I was diagnosed those were my words, “I have MS but it does NOT have me” Many years later, it did sort of start having me. I still have my smile on my face, still fighting but at the same time have a very realistic view of the monster. Thanks for putting it in writing!

  • Tess
    3 years ago

    I think that damn tshirt should be shredded and replaced with “It does have me” and I’m dealing the best I can.

  • Devin Garlit moderator author
    3 years ago

    Thanks so much for reading and commenting! It’s very nice to see others feeling the same way I do. That “I have MS but it doesn’t have me” phrase is so popular, I’ve worried I might get some backlash from this opinion!

  • potter
    3 years ago

    My smile has also changed, my husband says I don’t smile very much any more. Potter

  • Devin Garlit moderator author
    3 years ago

    I’m very, very sorry to hear that.

  • kristensimas
    3 years ago

    Thank you, thank you, thank you. I have had ms for 14 years and I couldn’t have said it any better.

  • Devin Garlit moderator author
    3 years ago

    Thanks so much! I’m glad there are others that understand what I am trying to convey!

  • murphy
    3 years ago

    FINALLY! Someone else says what I have been thinking since my diagnosis and beyond, MS does indeed have me. I may fight with it in a daily basis but we do have each other and yes, I hate it, passionately.
    Thanks for an MS thoughtful posting, Devin, one that sounds like it actually comes from someone with MS!

  • Devin Garlit moderator author
    3 years ago

    Thanks so much for reading and commenting! I know all too well what it’s like to read something from someone who doesn’t actually have the disease, and that’s a big part of why I do this!

  • @masbrautigam
    3 years ago

    Thanks for this great article.
    I have the same view. I have had MS of 20 yrs or so,but diagnosed 2012.
    Recently I did an article for Amsterdam stating that all these active marathons and climbing mountains showed a false face to MS,or not showing both sides.

  • Devin Garlit moderator author
    3 years ago

    Thank you for reading and commenting!!!

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