I have MS and MS does sort of have me
Last updated: November 2017
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.
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