Perspective on Excessive Positivity

The community of people who suffer from Multiple Sclerosis grows every day. With that, the amount of people who try to take on the role of inspirational social media warriors grows with it. I feel like every time I open Facebook or Instagram, I see multiple people exclaiming how they “decided” to thrive with MS and not let it “have them”. I’m very happy that they are doing well, so far anyway, but just because they are “thriving” doesn’t mean those who are not haven’t been fighting just as hard, if not harder.

Positivity sells

Let’s face it, positivity sells. People want to be heroes and want to see heroes. Even the National MS Society’s social media seems like an unending stream of feel good stories. Again, great for those people, but there are other stories out there. For every wife that has stood by her man in sickness and health, there are those that haven’t. For all the MS patients that have just finished 5Ks, there are some who are in wheelchairs. I’m all for remaining positive, but when you see so many positive stories without really seeing the other side, it begins to diminish the effectiveness of those tales. Aside from that, it can begin to have a pretty negative effect on a lot of those people that are struggling.

If only I were more positive…

Perhaps it’s just me, but I kind of hate seeing how so and so has MS and just completed a race where they’ve run or gone through obstacle courses. I’ve worked hard to stay healthy, done everything I’m supposed to, tried many treatments, and yes, even remained positive. My legs still won’t let me run anymore, and I would do almost anything to be able to run these days. It has nothing to do with any decision I made, (well, except that I was off of a disease-modifying medication for a time, that was a decision and a very bad one). But I’ve made no decision to “not get better”. Many of these stories and inspirational people make it seem like I should just be able to decide to run again. That if only I were more positive, the lesions in my brain and spine would somehow disappear. Like my thoughts will magically heal the myelin that’s been eaten away from my nerves. That’s just not how it works.

What I find inspiring

I’m so far removed from being able to run again, I feel like I’d do better with an inspirational story about someone who took a shower and was able to do something afterwards (and if that ever happens to me again, maybe I’ll write a feel good story about it). If that happens though, I know that it didn’t happen because I decided to make it happen. I didn’t will it to happen. It simply turned out to be a better day than most. If I ever do write about it, I’ll try to keep in mind those that can’t take a shower and do anything afterwards, because I know what that’s like.

Makes me feel like a loser

I’m not saying all of these positive stories are bad, but I really do dislike when these folks proclaim that they did it because they’ve willed it to happen. I also tend to roll my eyes a bit when they make huge proclamations about what they’ve accomplished when they haven’t had the disease for that long. I’m happy you succeeded at whatever you’re proud about, but a lot of folks can do that in their first ten years. It still sometimes makes me feel a bit like a loser though, and I’m sure it does for others as well.

Folks that have been through the grinder

I may be a minority here, but I get a lot more inspiration from the folks that don’t have it easy, that have battled the disease for a long time. That have trouble showering, have had people leave them because of their disease, and that can’t compete in a 5K because their legs won’t work: the folks that have really been through the grinder of MS and kept going. Those are the people the people that motivate me. They fight hard every day and don’t get better, but they’ve learned to adapt and make the most out of life. Again, props to all of those who can run their 5Ks, have happy marriages and shower with ease, but please remember, there is another side to MS too. That side may not seem as cheerful, but it’s no less important.

Thanks for reading!

Devin

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Comments

View Comments (48)
  • MyMe2isMS
    2 days ago

    I’ve attended a support group which was, in my opinion, overly positive. There were no problems, nor changes, medicines worked superbly. When I asked about issues with the legs- was it weakness that affected walking or numbness or spasms? No answers, not even general one. My legs and feet swell. The feet feel round on the bottom, not making good contact on the ground. The toes spread out not even touching the ground. The spasms in my legs, though not visible as the video shows, but I can feel them “bubbling”, like the bubbles in an old lava lamp. The shakes in my hands can be embarrassing…. in a restaurant one day while eating a sandwich with lettuce, tomatoes and mayo the shakes hit. Exploding the sandwich from my hands. Very casually the waitstaff asked if I needed more napkins. . A sample of ms in my life.

  • Devin Garlit moderator author
    14 hours ago

    Thank you @MyMe2isMS, sorry to hear of your experience. Unfortunately, I feel there are a lot of support groups like that. Remember, you’ll always find someone here that understands!

  • Karen416
    3 days ago

    Thank you for the much needed post. I too, have difficulty feeling all tingly for people that proclaim, “I have MS, but MS doesn’t have me!” These are people that are new in the disease process. Maybe, they will ultimately be lucky and not cross over into SPMS. I’ve had MS for 25 years. Two of which have been transitioning to the horror of SPMS. Yes, taking a shower is horrible for me. When I worked full time, I’d shower before work and before bed. I had that luxury. Now, I’m lucky if I have the energy, ability and lack of pain to shower every three days or so, and that is with my husband’s assistance getting in and out.
    I agree, too much positivity demeans the rest of us in a daily struggle. Thank you for writing from the not so positive side.

  • Devin Garlit moderator author
    3 days ago

    Thanks so much @Karen416, really appreciate you taking the time to share your thoughts!

  • wensjudy
    4 days ago

    Agree! Thank you for your attitude!

  • wensjudy
    4 days ago

    Hi,

    I will be 74 years old in a couple weeks. I have had MS for 44 years, since I was a 30 year old young mother. I have gone through good times, minimum symptom times, and horrid, pain wrenching, almost immobile times. I like your article. I am someone who practices gratitude, feels blessed by so much in my life, and MS has hugely changed my life. I think the most offending are people who are glib about this Multiple Sclerosis challenge, who have experienced very little of its crushing blows. I am a survivor, a thriver, but it is not easy!

  • Devin Garlit moderator author
    4 days ago

    Thanks so much @wensjudy! While I haven’t fought this disease as long as you, I can already tell you it’s taught me a tremendous amount about appreciating the small things in life, in some ways, I feel I am even better for that. I do hope that others can realize that that the stereotypical story of someone running a 5K is not the only source of inspirational story out there!

  • aod98
    4 days ago

    I have been feeling this way for a long time. Every feel good article I read, I wait for the real life MS experience to appear on the page like the story about running a 2k doesn’t include their next day uphill battle to function. I believe that where we are in our own disease journey is who we relate to on blogs and forums. After reading an author a couple of times I filter them in or out of my in box based on the sense of reality they portray in their articles. Your writing makes me smile because of your humor and realistic musings about your life.
    I feel empathy for all of us no matter what part of the journey where we find ourselves. But, let’s keep it real. Life in itself has ups and downs and sugar coating doesn’t work when it isn’t real.

  • wensjudy
    4 days ago

    I appreciate your comment, aod98!

  • Devin Garlit moderator author
    4 days ago

    Thanks so much @aod98! I appreciate you taking the time to tell me that! I have a feeling there are a great many of us, who would prefer some more grounded and realistic stories, varied ones, at the very least!

  • Donna Steigleder moderator
    4 days ago

    Sometimes just making it through each day and accomplishing the essentials is a success story. At our house, we measure energy in “pennies.” We assume Lynn, my spouse with MS, gets up with a certain number of pennies each day. Each movement uses up energy that removes pennies from his bank. We have to consider carefully each day which activities he will spend his pennies doing because once they are gone so is his energy for the day. After that, we can’t count on him being able to accomplish anything independently and he needs to go to bed to restore his supply.

    I think that’s true for most people with MS. Some folks may be blessed with more pennies than others but all run out of coins at some point. Thanks, everyone for sharing. Donna Steigleder, multiplesclerosis.net moderator

  • lightweaver
    4 days ago

    This is so true. I am no longer a warrior, I just want to take a shower. I want to walk easily to my front dooe when the bell rings.

  • Devin Garlit moderator author
    4 days ago

    Thank you @lightweaver! Remember, sometimes, just doing the small things makes you much more of a warrior than those people running marathons!

  • Kathyjo
    4 days ago

    Thank you, thank you, thank you for saying this! I often feel the same way. I’m in a wheelchair & struggle to do a lot of things. Taking a shower used to be a no brainer, now it takes so much effort…I have a shower chair & I have to lift my legs one at a time to situate them, I try telling my legs to move, or telling my brain to use muscle memory but they don’t seem to listen… and I have to hold onto something in the shower for balance so it’s very hard to wash my hair etc…I get tired of sitting in my chair too, so I get help laying on the couch, or have someone put my legs up. Hell, sometimes I just want my someone to move my feet for me! The other night I couldn’t turn over in bed without help, very scary, frustrating & hard to explain…so again, thanks…

  • Devin Garlit moderator author
    4 days ago

    Thank you @Kathyjo! Appreciate you taking the time to give your thoughts!

  • Michelle
    4 days ago

    Devin,

    You frequently express what I feel, and for that, I am very grateful! I’m often feel left out of all these boards (and very rarely visit them) because everything is all overly positive and about people who can do so much that it is often depressing for me. Perhaps I’ll start writing myself after reading this. There never seems to be articles for people like me- I can’t run or bike anymore, just walking is a challenge. But I can sorta get around so I’m not in a wheelchair. I just don’t fit in anywhere, and I know I’m not the only one. Reading your story’s/articles makes me feel better and makes me think that maybe we need more of this out there.

    I hope you have several of your better days. 🙂

  • Devin Garlit moderator author
    4 days ago

    Thanks so much @Michelle! I think we definitely aren’t alone in this line of thinking! I hope you are having one of your better days too!

  • redsx
    4 days ago

    Thank you so much for your articles. I love your perspective. I was an ICU nurse for 25 years… fell on my face and the surgical ICU and I have not been able to work since. I knew something was wrong for about 10 years I have a son with Down Syndrome who is 10 years old and I had to work and I had to take care of him until I couldn’t anymore. the last year I haven’t been able to work and a profession I love so much it took a lot to do my job. Now I am lucky that I can go 300 feet and I’m using a portable wheelchair now. All your friends disappear and you make new friends that are more accepting. I have to adjust to being taken care of instead of taking care of people who are critically ill. And to learn to go with the flow because MS gives me no choice.
    I appreciate your words you speak for so many thanks again Red.

  • Devin Garlit moderator author
    4 days ago

    Thank you @redsx, and thanks for sharing some of your experience as well!

  • Theresa
    4 days ago

    Props to you, Devin, for telling it like it IS…not how we WANT it to be. You inspire me more by giving an honest view of the MonSter than any (ultimately depressing) saccharine sweet story of someone who merely “decides” to make a great feat successful (where can I find that superpower?!?). Sometimes…just getting a shower IS our 5k.

  • Devin Garlit moderator author
    4 days ago

    Thanks so much @Theresa! I really appreciate you saying that!

  • topsyjkv
    1 week ago

    I don’t try and tell people all that they could do if they were more positive. I’m just lucky to have been that way throughout my life, ok yes I have bad days but I do tend to stay on the positive happy side.
    I agree with you that it’s fantastic that some can run marathons, but I’m happy on some days just to be able to get out of bed.
    We all deal with things differently and should stop judging/preaching at others how to live their lives.

  • Donna Steigleder moderator
    1 week ago

    Thanks for sharing with us @topsyjkv and being part of our community. Well said. Donna Steigleder Multiplesclerosis.net Moderator

  • Missvampunk
    1 week ago

    Seriously Thank you so much for this article. I have had trainers, I used to go to the gym all the time. and slowly that was all something I just couldn’t do any more. I don’t have the energy to do so. What really hurts is when everyone just tells me well you used to do it. You just have to get back into it.
    I have completed 3 half marathons. I never ran I walked but I did it. and because I have done them in the past everyone seems to think I still can. I was when I was first diagnosed so I wasn’t suffering from many of the effects just yet. I really enjoyed the Huntington Beach Half I had signed up again. My body shut down at the 5k mark.
    So I fully understand the people being over positive. it can really hurt a persons feelings. Its not like we don’t try.
    Sorry for rambling. Have a great day and please keep writing stories. They help much more than you can ever imagine.

  • ShelbyComito moderator
    3 days ago

    Hi @missvampunk, thank you so much for taking the time to share a bit of your story. Being someone who also loves marathons and races, I understand how heartbreaking it must feel to not be able to do them like you used to. Even harder when others don’t understand what you’re going through! This community does, and you are not alone. Best, Shelby, MultipleSclerosis.net Team Member

  • chong61
    2 weeks ago

    Devin,
    Once again thanks for a very moving post. You lift me up by your writing. You are definitely not a minority, your words echo the ones I wish I could write again.

    I am 76 and have been living the MS life for a long time.

  • Devin Garlit moderator author
    2 weeks ago

    Thanks so much chong61, means a lot for me to hear that!

  • sueaceuk
    2 weeks ago

    Fantastic article. I find it so hard being around perky newbies. DMTs happened too late for me, full time wheelchair user, need help to shower and dress and arm now going wrong too. Sorry to be a downer for the positive thinkers. Apart from this life is good. Thank you for your thoughts

  • Devin Garlit moderator author
    2 weeks ago

    Thank you sueaceuk, I appreciate that! Thanks for reading!

  • wardenb
    2 weeks ago

    Thank you Devin. Your honesty is inspirational to me. People need to see all sides of MS to spread true awareness of this brutal disease. I have been sharing my journey for the last 3 years, and have been brutally honest about the daily struggles that I face. It is not being negative, I think it is being positive that we get up and battle every day. It shows the messy side of the disease, the side that alot of people face. I have primary Progressive MS and it has been a hard journey. Keep on spreading your stories to spread true awareness.

  • Devin Garlit moderator author
    2 weeks ago

    Thank you wardenb, I appreciate that! Keep up the fight!

  • lalkana
    2 weeks ago

    Thank you, Devin. Of course, I’m happy for any fellow MSer who is doing well. However, there is the other side; the stories of people facing struggles like my own, and many facing much more daunting circumstances. Climbing mountains is a fantasy in my world, while fighting off demons that never die and going on the best you can, is inspirational to me.

  • Devin Garlit moderator author
    2 weeks ago

    Thank you lalkana, victories that some see as small, can be every bit as inspirational as climbing mountains.

  • dhortho1
    2 weeks ago

    SueK, you need to chill.

  • SueK
    2 weeks ago

    Let’s leave MS out of the picture for a moment. I watch the Olympics and see champions breaking records. Should that irrate me, making me feel like a loser because I am not a gold medal winner? Or I see first responders that are hero’s, saving lives while risking their own. Does that make me a coward not caring for others? No and no!!! No two people are the same, with or without MS. Those that succeed and accomplish the unthinkable should not hide in the shadows because someone with a inferiority complex doesn’t get their jock strap tied up in a knot. The problem is not the positive attitudes of those that thrive, but rather the negativity, envy and jealousy of those who compare themselves to them to measure their worth. No one is judging them but themselves. Indeed, for one to swim the English Channel and succeed is just a stepping stone to bigger endeavors. For some, being able to take their first step on prosthetics after having their legs blown off in an explosion is an award winning moment. Both are admirable. The measure of achievement comes from within. That’s what drives a winner. Competing against themselves, beating odds and inner expectations, if only for a moment. You judge how well you are doing based on what you did yesterday. And if things are getting worse, you judge your will to wake up in the morning and face another day as “winning”. There is no competition, no contest, no expectations that are not self imposed. But to speak negatively of those that are doing “their best” to cope? That’s self pity at its worse. It is a telling sign that the heart, soul, and emotional state is hurting more than the body, and instead of getting help, you would rather pull down others for your own ego.

  • Michelle
    4 days ago

    SueK. I have to ask, did you even read the article- or at least read without an expectation? As Devin Garlit wrote, this article isn’t about being negative or even about being positive but about sharing some of the struggles others with the disease face. Because all the “positive” stories about people who are still able to run, bike, etc are actually disheartening to those who struggle just to take a shower. Its because to those who do struggle, those stories about the struggles and bad days are uplifting- they say (and more importantly allow you to feel like) “I’m not alone” too so many.

  • chong61
    2 weeks ago

    SueK.
    I am baffled that you think if I just quit feeling sorry for myself and think rosy glowing thoughts it will take my disability and pain away. When I was in the floor this morning and had to crawl to a chair so I could finally get up I wonder if I did that to myself for not telling my brain I am fine. I lost my ego a long time ago thank goodness. It means that I know what this disease has taken away from my life and I know it is not finished with me yet.

    I am not attempting to put you down and we all deal in different ways. I am happy it works for you, but somewhere in the future and you have legs that will not hold you up, your hands are numb and you are searching for a word, just think happy thoughts and you can leap up and move on with your life. I certainly do not wish to pull down others and if you see it that way, I am sorry.

    Unfortunately, I am unable to convince my self I have done this to myself.

  • Devin Garlit moderator author
    2 weeks ago

    Hi SueK, I’m not sure if you read the article or not, but no one is knocking or talking negatively about anyone for doing their best. This is more about how only certain types of people and stories are thrust forward and in to the faces of those who may have a harder time relating. To the person confined to a wheelchair, against their will, when you mostly show a particular kind of inspirational story, it can be off putting. This is about representing everyone, not tearing anyone down.

  • mkornik
    4 days ago
  • StephMS35
    2 weeks ago

    Thank you for always writing your truthful side of the story to having this disease.
    As always you took the thoughts out of my head and constructed them nicely for people to see. Peoples happy MS inspiration stories almost always upset me. Why should I have to feel bad for myself or disappointed in myself for feeling angry? Your right th as t everyone has a different MS story but I agree with you that more variance needs to be presented in articles to include range of all peoples with MS stories.

  • Devin Garlit moderator author
    2 weeks ago

    Thank you o37kby. I think some people believe it’s shameful to admit that seeing those stories all the time can have a negative effect on people. I’m not sure why looking for more representation is a bad thing or why looking for more inspirational tales that relate to others means that we are full of “self pity”. I think the bottom line is that a lot of the people who push these particular stories don’t really have the first hand experience of their audience.

  • collena
    2 weeks ago

    I’ve been off DMTs for a while now and while I don’t feel any better physically I do feel a whole lot better mentally. All the ‘over-coming’ and ‘beating MS’ stories get on my nerves too I think they contribute to the general public not knowing and saying things along the lines of what you would say to someone that had a car accident or the flu compelling me to nonchalantly reply ‘MS doesn’t go away’.

  • Dede74
    2 weeks ago

    Devin,
    You are correct about this, the MS magazine I receive in the mail is all about the accomplishments of so many that are able to thrive. I believe we all thrive in our way, even if it is one thing we are able to achieve throughout the day. For example, getting out of bed, brushing your teeth, doing a load of laundry, etc. There are many days when my feet hit the floor mentally I just want to crawl back into bed, but if I am able to get up and take my son to school that is one big accomplishment for me on certain days. If I am able to walk my dogs on the levee without my legs stiffening to the point of no return, that is another gold star for me. I have had MS for over 10 years now and on disease modifying therapy, but every day is a struggle. My sister has had MS over 20 years, she has it ten times worst than me, but we help each other keep going. I appreciate this article, because its tough especially when everyone experiences different issues. We should all be proud of ourselves no matter what task we are able to accomplish each day, even if it is we are able to comprehend cognitively. That is one of my biggest challenges everyday.

  • Devin Garlit moderator author
    2 weeks ago

    Thanks so much Dede74, I appreciate the comment!

  • username
    2 weeks ago

    This is a MUCH needed article. Thank you, Devin! I stopped visiting the Natl MS Soc’y website years ago for this exact reason. Really appreciate this well argued advocacy for the let’s be real version of life with this funky disease. Also really appreciate your essays and commitment to write them and share. Take care, the benched runner in me salutes the runner in you. One challenge: DMTs are not the only answer, either. Especially with some of the side effect profiles. Everybody’s different but this is one area of treatment where we are presented with one option, as if it is the only one that exists. It’s not.

  • Michelle
    4 days ago

    Your comment about the MS society rings home for me. EVERYONE tells me to go to the MS society for help. I find them to only provide info for the best case stories (people running the marathons and such) and the help articles for the absolute worse cases if you look around hard enough (wheelchair bound), and absolutely no help what so ever- at least the branch in Colorado. I really don’t rely on them for anything and don’t encourage people to donate to their fundraising efforts because of it.

  • Bblue
    4 days ago

    I don’t communicate often but I wanted to tell you that i agree with you about the DMTs. I don’t want to feel worse than I already do. I struggle to do the things that have to be done in life. I don’t have extra energy or can i risk not being able to do those things because of side effects or other diseases brought on by treatments. Life with MS is a constant battle between the disease and the risks of treatment. I live alone so I have no one to pick up the slack for me. So far I have been blessed by not having really bad MS, but things have reached a point where it is a struggle to do the things I must do. I am grateful for what I have- don’t get me wrong. I still wish I didn’t have to fight this battle!

  • Devin Garlit moderator author
    2 weeks ago

    Thank you @username, appreciate you sharing your thoughts on the matter!

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