Sometimes You Can Blame MS

Sometimes You Can Blame MS

As I was scrolling through social media yesterday (and during MS Awareness month, I always gain a large number of new “friends” thanks to the awareness banner on my profile picture), I noticed a new follower doing what I assume (hope), was his best to encourage folks with the disease. This person posted a status saying something along the lines of “don’t blame MS for all of your problems”. While his sentiment might have been positive, he certainly, and deservedly (in my opinion), received quite the backlash from others. This scenario highlights not only the snowflake nature of the disease, but the gap that often exists between those who’ve had the disease for a while and those who haven’t.

After the first decade

I don’t think we can say it enough, everyone with Multiple Sclerosis has a different course and experience with their disease. If you are still running marathons, well that’s great, there are others who’ve had it for the same or less time than you who are wheelchair bound. There are many others in your same position who did great in their first decade or so with the disease, until it caught up with them (I was still running marathons in my first ten years too). We get it, MS doesn’t have you, but for many people, it does have them, and it isn’t their fault. It has nothing to do with how positive they are. The disease really can take a lot from you, regardless of how motivated you are.

It’s okay to be angry at the disease

People began to chime in on the person’s comment, pointing all of this out to him. Many chimed in with very similar stories to mine. Like them, I certainly don’t blame all of my problems on Multiple Sclerosis, but, well, it did end my career and my marriage. It’s also responsible for me being in a lot of pain, and a host of other issues. There are some rather large and legitimate issues in my life that I can blame on MS. I’ve been positive, I’ve tried the diets, the different medications, believe me, I’ve done everything possible in the nearly two decades since I was diagnosed. I’m also not paying for poor habits prior to my diagnosis, I was a collegiate athlete in the best shape of my life when I was struck down with the disease. It’s not my fault, it’s no one’s fault. The only enemy here is the disease. I think it’s OK to blame the disease, it’s OK to be angry at the disease. You can’t let that anger consume you and you need to keep fighting, but it’s OK to admit that things might be different without it.

It’s not because of our attitudes

That is the problem when people make comments about not blaming MS or not being positive enough or any of the other attempts at being motivational. For many people who have had a rough go of it, motivational type messages can feel like a real slap in the face. It’s not because of our attitudes, it’s because we’ve been through hell. There is a scene in the movie The Deer Hunter where the three guys that are about to go off to Vietnam encounter a veteran who is home visiting from the war. While they are all gung-ho and excited when talking to him, he is glazed over and almost in shock about everything he’s seen. While rewatching this classic recently, this scene made me think of this exact scenario between the different groups of people battling MS. That veteran wasn’t glazed over and unreceptive to the three new recruits because he wasn’t patriotic or positive enough, he’d just seen a lot of sh*t. A lot like many of us who’ve fought this disease for a while.

Thanks for reading!

Devin

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Comments

View Comments (34)
  • ell364
    10 months ago

    I have been dealing with MS for 40 years , I do try to keep a positive attitude most of the time. Sometimes it is hard so I do blame MS for screwing me out of things , but now as I look back , my life has been good despite MS . It is what it is , stay positive , laugh a lot and love yourself . Never give up .

  • mollyculelove
    10 months ago

    I always try and remember that we all have a backstory..so at the end of the day none of us really know everything another person has had to carry around. But if we have the similarity of this disease then the best thing to do is build each other up and not judge because most of us have come here because we lack that daily support in our lives. I enjoy your writing thank you.

  • Debrahoff2
    10 months ago

    Thanks for sharing such personal thoughts and feelings. It is upsetting that some of the comments I have read are full of judgement, rather than compassion. While everyone is entitled to his or her opinion, it is important to not judge because everyone is affected differently by their MS. If you are one of those that has not been affected or has overcome your MS, that’s great and I appreciate your comments and ideas on your perseverance, however no one should ever make someone who is expressing their raw feelings on how MS has , or is affecting them, feel bad for feeling the way they do. Having compassion and empathy for those around you with or without MS is a characteristic that I would hope everyone would practice. It’s not ok to make some one feel bad for expressing themselves, especially on this site. If you’re doing great, be appreciative and then be supportive and kind to those who may be struggling because this site is supposed to be supportive, and positive and bring people together, not apart. Thanks so much again Devin. I so relate with your feelings and opinions on so many levels..

  • MissJenni
    10 months ago

    Thank you SO much for writing this! I’ve had people that barely know me, even have MS but are very active and work, tell me it’s all about my attitude. That if I didn’t acknowledge that I had MS, kept a positive attitude, don’t talk about it or tell anyone I have it, my symptoms would be less, I’d feel 100x better, etc. I was live, WHAT?!?
    I used to be VERY active! I was a prison guard in a maximum security state prison for many years, worked out every day, only 25% body fat, played sand volleyball for the prison and fill in teams, was very active. Then was dxed with MS when some issues started. I’ve been going down hill slowly for 8 years, and a lot of the days I’m lucky if I can get out of the house.
    I was just told this last Monday the results of my recent MRI, and my MS is progressing. A lot. I’ve been in excruciating pain, exhausted, vision being extremely blurry a lot, and sickly nauseas 24/7, and stuck in bed most of this month. So I knew something was up. It broke my heart because I’ve been doing everything right. The positive, fighting attitude, taking my meds, injections, exercising, etc.
    Like you said, everyone person is different. I truly dislike how the ones that aren’t affected by it much to where it doesn’t affect their quality of life, tell the rest of us to quit trying to have “pity parties”. Or say if we just keep happy and have a positive attitude, or don’t talk about it, yell anyone we have it, etc…etc… My old family physician in backwoods Nebraska told me if I had more faith in Jesus, I wouldn’t have so much pain!
    I’d love to go stay with one or two of these happy great attitude people so they can show me what I’m doing wrong.
    My friend that played in the NFL, just lost one of his buddies last night to MS, that was also in the NFL. He did everything right too……

  • Monk
    10 months ago

    Thank you, Devin for writing this article. It really resonated with me. Please not let the “negative” replies from the “always stay positive” folks deter you.

  • Tess
    10 months ago

    Devin…Thank you! “We get it, MS doesn’t have you, but for many people, it does have them, and it isn’t their fault. It has nothing to do with how positive they are. The disease really can take a lot from you, regardless of how motivated you are.” This is what I’ve been saying all along.

    For the gentlemen who claimed he hasn’t had. Symptom in 10 years, on Tecfidera…we are so happy for you. However, that is you. You can afford to say MS hasn’t controlled your life because you’re symptom free. The multitude of sufferers can’t state the same: it has controlled their life. It makes us envious, sad, depressed and angry. I apologize if I’m putting words in any ones mouth…just speaking for myself. So for you just don’t dismiss what others are experiencing.

    Thank you Devin for writing 5is article.

  • Devin Garlit moderator author
    10 months ago

    Thanks so much Tess! Our disease is so odd because we all experience different severeities of it

  • Devin Garlit moderator author
    10 months ago

    Thanks so much Tess! Our disease is so odd because we all experience different problems and progression. It can create a divide between people who have been lucky to have few problems and those who have had many. Sometimes people being dismissive of just how bad MS can affect someone will obviously upset some of us. Just like throwing out there that you’ve had a relatively mild course. Many may think that they have conquered this disease on their attitude but that’s simply not the case. That’s just how the disease works. I’m actually a pretty positive guy, I see accepting that my disease has had a major impact on my life as a good thing. I know it’s not my fault, it’s not that I didn’t have the right attitude, it’s not anything I did, it’s just what happened to me. That can be pretty empowering.

  • MissJenni
    10 months ago

    I love what you said

  • MissJenni
    10 months ago

    I lover what you said

  • meissie47
    10 months ago

    Hello All! I really think as you said it was meant to motivate but it actually can cause some people to be even more discouraged than they already are I think. At least that’s been my experience. Why cant we blame MS sometimes. If most people are like me I go through every scenario I can BEFORE I blame MS. But I truly believe that a majority of MSERS don’t just blame MS for all of their symptoms.

  • Lisa
    10 months ago

    Hi Devin –

    I have always appreciated your thoughtful and deeply personal posts. This is just another example of some fine writing. I don’t think you were telling me not to have a positive outlook. That would be silly.
    Thanks, as always, for sharing with us.

  • Devin Garlit moderator author
    10 months ago

    Thanks so much Lisa! Always appreciate you reading!

  • Devin Garlit moderator author
    10 months ago

    Thanks so much @skcullers, appreciate it. I write a lot, so not everything is going to come out great for everyone. We’re such a wide ranging and varied community. I’m very much always open to hear whatever anyone wants to say. I welcome it. I too struggle with thoughts and words often and I most certainly don’t always convey what I mean, how I mean it. I’m always open to suggestions, particularly if done in a kind way. I think seeing differing opinions and having discussions is very important. I can’t always get to every comment these days (because there are so many), but I certainly try my hardest too. Every comment, even negative, is extremely valuable and appreciated to me.

  • skcullers
    10 months ago

    You writing is exceptional — honest and comforting. Sorry that some folks just don’t get it. A positive attitude is a good thing on the days MS doesn’t send you down the rabbit hole. Thinking that can cure you is great if you can go into a fantasy world and live there. Sad too that when we all look back so much easier to deal with when we were younger . Neurologists will all tell you the drugs will slow progression not cure you and unfortunately the number of us who move into the world of secondary progressive is pretty much par for the course.

  • forkergirl
    10 months ago

    Hi Devin,

    I am one of those who has never blamed MS for anything. I am 64 years old, and my MS was diagnosed in 1996.

    I am extremely positive and have not had a symptom for the past five years. I know that I am lucky. No one ever guesses that I have MS.

    I do indeed believe in the effe Attitude definitely helps, Lots of of positive attitude, for when there is nothing else, there is always my attitude.

    ‘I’ve had MS for many years but I seldom talk about it. It isn’t something I need to focus on. Just a fact of my life, but does not rule my life at all. Diagnosed for 22 years, the first years were rough, medications I took, injectables did not work for me at all. involuntary movements of my arms and legs. Difficult to walk at all,

    But I remained positive and that helped. After so many years with needles and injectable therapies, my wonderful neurologist recommended a capsule and this capsule revolutionized my life. I can walk 8 miles without assistance, even at my age.Tecfidera for me, and a normal life, that even contains Love

    I have 13 books published, but none of them about MS. Not one.

  • mamak1118
    10 months ago

    Hi, all –

    I’m bummed that Devin is getting some negative feedback here. Devin writes an opinion piece, which I think we can agree is very helpful. I don’t think he should get backlash in this “protected” forum. We’re all in the same boat to some degree; let’s be kind to one another.

    As for the comment he was referencing, it doesn’t matter what they “meant”; what matters is how it was perceived by those suffering from the disease (or any disease for that matter). If they wanted to be positive or helpful, they could have been more careful with their wording.

    Devin – thanks, as always, for sharing with us!

    Kristi

  • Devin Garlit moderator author
    10 months ago

    Thank you Kristi (mamak1118), people are entitled to backlash, although I never expected it with this one as many people in the situation I was referring to felt the way I described. I never saw this piece as an attack on being positive, that just seems silly to me. I do think it is ok to blame our disease sometimes, many of us have lost a great many things to it. I think it’s ok to admit that, I think it’s even sort of empowering to say, hey, the disease did this to me. It wasn’t my fault, it wasn’t because I wasn’t positive enough, it’s the disease’s fault. I kind of think that can actually be a pretty positive thing, particularly when so many people feel they need to blame themselves.

  • meissie47
    10 months ago

    I agree 100% Kristi !

  • mrsaristotle
    10 months ago

    Did he mean though don’t blame all your problems on MS as in our life, or if we have symptoms. I know people who have blamed new symptoms on their MS and put it down to that, and to their detriment turned out to be serious health issues other then MS. We can all read things in a different way.

    You are saying he means your life personal etc, well let’s face it perhaps with no disrespect your marriage may have failed without having MS. I had to leave a very good career because at the time I was sick, I had no idea why so I couldn’t blame it on MS, just on the fact my body had decided you are not working and that’s that.

    In fact my MS saved me yes it did. Now there is a new spin on it.

    I was working 70 hours a week and one day feeling rough I saw my GP and he did a blood pressure check and it was dangerously high, and he put me on immediate tablets. It wasn’t long after that I was unable to get out of bed and my journey of MS began well actually it began in 2000 but this was 2006. By stopping me working my BP slowly went down and down and is now under control. If I had been continuing the way I was well who knows the story may have been different.

    Having MS and waiting over 10 years for a diagnosis didn’t ruin my life. Having a chronic illness made me change my life and the way I dealt with things.

    What ruined my life was loosing my mother in 2016, and my beloved husband five months ago to a disease called COPD. He died without warning. The only thing with having my MS is sadly it made it really harder for me to grieve as well as you can expect it was like an atomic bomb going off and I am still suffering the fall out. BUT then if I had any chronic illness like say, RA, or Lupus, or Lymes etc et el, it would be the same.

    I think if stuff goes wrong in our life its very easy to BLAME it on our illness I don’t think there is anything wrong in saying to anyone don’t always blame everything on your MS, as you can read it twofold, physical or personal. Its easy to blame a failure on being sick, but it doesn’t mean we wouldn’t have failed anyway if we had been healthy.

    Its healthy to be angry at any disease that invades our body I have 3 lots going on but I don’t blame anyone of them on changes in my life, as well that’s LIFE isn’t it stuff happens. I think its a poor show if people attack someone for saying it to be honest.

    I suppose they can quantify an attack by using their MS as an excuse perhaps when really the guy is just making a simple statement we can either choose to agree or not and move on without making him feel bad about himself.

  • Lisa Schlecht
    10 months ago

    Hi Devin,
    I always follow your posts and appreciate your insight into living life with MS however, I have to say this particular post bothered me a bit. While I do not think MS is the root of ALL of everyone’s problems, I do believe a positive attitude, while not healing what a person faces each day, can make it a whole hell of a lot easier.
    I am reminded of my Grandmother who died of lymphoma years ago, before my MS diagnosis over a decade ago. She taught me that even the days when she couldn’t stand up or go to the bathroom by herself, if she remained positive and laughed a little each day it would be a little less painful to digest the reality of the situation. Of course she was angry, we all were, but she taught me to take the bad with grace, humor and positivity – because when you are losing so much, why not try to make the time you have left a little brighter?
    I don’t think motivational messages are a way for people to imply “if you only”…..I think it is a way to encourage people to feel hopeful, not that the disease will go away, but that there is much more in this life than focusing on what has been taken from you.

  • Devin Garlit moderator author
    10 months ago

    Thank you Lisa Schlecht, meissie47, I in know way was saying being positive is a bad thing. I was simply saying that for many people, when you’ve battled the disease for many years and had many problems because it, it becomes tough to hear. Making a blanket statement that you “can’t blame all of your problems on MS” isn’t being positive, it’s being dismissive of many people that do have serious issues because of it. And that’s just it, being positive and having a great attitude is important, but when you’ve heard people beat that drum for many years, it can wear on some people. I don’t think anyone would saying being positive is a bad thing. However, it won’t cure the disease, and that’s very much how it can come off to many veterans of MS.

  • Spratt
    10 months ago

    The story of your grandmother was beautiful and encouraging to me. She must have been a very special woman. Thanks for sharing this.

  • meissie47
    10 months ago

    I really don’t think Devin was trying to take anything away from being positive I think he was just saying that some people see it as a cure all and its not. 🙂

  • NEVER EASY
    10 months ago

    Jacksonlowerkeys, I personally don’t sense one bit of feeling sorry (Devin) for himself. I too enjoy Devins’ writing and, not once have I ever sensed he ever felt sorry for himself, ever. I too was in tip top condition like he. I rode mountain bikes, road bikes, lifted weights for years. And then it hit me like him, outta know where, kaboom. My first five years have been tough but, I soldier on like Devin. Devin has had some significant losses as you are well aware. He’s still is able to write and share stories that are inspiring and thought provoking. That in itself is monumental in my opinion. So, I say respectfully to you, leave religion out, we all have our own ways of coping with MS and, for you to prescribe faith for us all, is in bad taste.

  • Jacksonlowerkeys
    10 months ago

    I’ve always enjoyed your writing but in this blog I smell you are feeling sorry for yourself. The outside world will seldom get it.That is just a complete waste of time. Flush it. You’re better than that. Keep the faith. Join us.

    https://www.facebook.com/groups/154611285254970/

  • Devin Garlit moderator author
    10 months ago

    Thank you Jacksonlowerkeys, not really sure how you think I was feeling sorry for myself, unless you maybe didn’t read the whole thing or just needed a way to advertise one of the thousands of groups on the internet.

  • 1LisaCPA
    10 months ago

    Wow. I’m going to say it: I think we have a damn good reason to feel sorry for ourselves!! Because MS can affect everything you do, because it never goes away, because it’s difficult in and of itself (getting a Dx, figuring out what drugs to take, etc. ad infinitum), because at times it has affected you and you didn’t even know it until much later…Devin’s post is fair and it’s hard to believe that someone else with MS has such unmitigated gall to call him “sorry for himself” has compassion. I work at staying positive, too. But your reply was just mean.

  • meissie47
    10 months ago

    Wow did you really just write this? And now you want us to join you? Are you kidding? How disrespectful.
    I don’t believe the majority of us that read Devins post got that vibe at all. While we’re all in titled to our opinions there is a way to say things and this was the wrong way.Especially if you want some one to connect with your group. No way. 🙁

  • tfs
    10 months ago

    Thanks, meossoe47 for replying to Jacksonlowerkeys truly appalling reply. I read this early and was so angry I could only think of very cruel and caustic remarks. Devin is a strong voice, and I know he can take it. I guess it’s better if ignorant people speak their minds. It’s better than keeping darkness hidden (I guess??) It encourages proper thinking and healthy perspective when the opposite is sloppily presented. THANK YOU, DEVIN. This was one of the best posts I have read. And yes, it did take your career, marriage among other things. I don’t view speaking the reality as “feeling sorry for yourself.” You are not dwelling. You are transforming this pain into a grounded place.

  • Michelle
    10 months ago

    Thank you. It doesn’t ever feel like people get just how much ms had taken.from me. I’m at nature, an active person. But the ms had taken that from me. I’m supposed to be happy I’m.not wheel chair bound, and I am. But being struck inside because i don’t have the energy is in many ways, just as bad and maybe even worse, at least for me. Greet I’m supposed to “be positive and grateful out isn’t worse””, but to.be honest, i’ve been wanting to shove those words down peoples throats.

  • Devin Garlit moderator author
    10 months ago

    Thank you Michelle, I think you very much got my point here, in that it can tough to constantly here those types of messages when you’ve been battling for a long time. It’s ok to admit that the disease has taken from us, I don’t think denying that makes anything better. In fact, I see it as empowering to be able to admit and remember that the disease did this, not us, it’s not our fault.

  • 1LisaCPA
    10 months ago

    I hear you. It can be infuriating to put up with that crap sometimes.

  • meissie47
    10 months ago

    AMEN!

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