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 sellsLet’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 spinewould 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 inspiringI’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 loserI’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 grinderI 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!