Living With MS As Long As Not Living With It

Last updated: March 2021

As I sit here, in the midst of a pretty rough week, I realize that yet another MSiversary is fast approaching. When I factor in the time that I likely had the disease before I was diagnosed, I can now say that I have had this illness about as long as I didn’t have it. A full half of my life has been spent having MS. When I say it out loud (or type it), it feels a bit shocking. As I always do, I will celebrate my MSiversary (which I consider my diagnosis date, February 2nd), but, I’m also taking some time here to reflect on life with the disease.

MS is part of me

There was a time when I used to hate the phrase “MS doesn’t have me.” One of my early articles was about this phrase and me admitting that, yes, MS does sort of have me. At this point in my life, living with it as long as not living with it, I can say that it’s not that it has me, it’s that MS is a part of me. That seems like something that you shouldn’t think, but it’s just an honest observation on my part. I no longer think of MS as something I have to beat or that’s beaten me; it’s simply part of me. It’s helped shape who I am (and that’s not a bad thing). It’s also had a massive impact on my life. Nearly everything about my current life has been molded by MS and what’s it’s done to me over the years.

Scientific advancements have come a long way

Science has made amazing advances since I was diagnosed. As much as people like to be upset about there not being a cure yet, the advances the scientific community has made have been spectacular. The very medication I am on was not available when I was diagnosed. I know that, if it had been, I wouldn’t be disabled today; I know my entire life would be different. It would be easy to be upset about that. Instead, I’m thankful. I’m happy to have it now, but mostly, I’m happy that others will have it and hopefully not end up in my position. It makes all those walks, read-a-thons, and other fundraising drives feel like they made a difference.

MS and its symptoms are relentless

At this point in my life with MS, it feels like it never takes a break. The “chronic” in chronic illness is so fitting. Because, while I live a good life, this disease never fails to remind me of what it’s done to me. The damage done by the relapses over the years has made life difficult. I am in pain often, I fall too much, and my memory and cognitive abilities are very often diminished. I feel like there is always something bothering me or going wrong and it never lets up. I wish I could get a break from this body, this life. I wish I could take a vacation in someone else’s body. Or just a vacation at all, really (even when my body feels decent enough, this disease forced me to leave my career, forced me to disability. Vacations and such pleasantries simply don’t exist for someone with my budget and abilities).

Impact on relationships

After living this long with the disease, I feel like it’s had a heavy impact on relationships in my life. Friends, family, romantic partners, you name it. The impact that living with this disease for a long period of time has on the relationships in our life can’t be understated. Pain, cognitive issues, and various other symptoms can make you tough to be around, too. (I’m not sure I would have put up with me as long as some folks have). The disease creates a divide, where people can’t understand what you are going through. Not only do others not understand you, It makes you feel alone, like no one “gets” you. MS is very alienating.

Hope

Despite everything, living this long with the disease has shown me that there is always reason for hope. I’ve said on past MSiversaries how living this long with the disease sometimes makes me feel invincible. That’s still very true. I feel like I’ve gone through so much with this illness but I’m still going. Life with MS has taught me that there are always reasons to have hope. It’s taught me that the future isn’t always what we expected or wanted, but that doesn’t mean it can still be wonderful at times. There are always reasons to have hope and there are always reasons to laugh.

Thanks so much for reading and always feel free to share!

Devin

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