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!


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