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Chronic Illness and the Burden of Unfulfilled Potential

Recently, I was going through the various comments on my articles. I came across a comment from someone lamenting how their life has changed because of MS, particularly with regards to their career and future.  They even dropped a fairly well-known quote (at least some version of it) on me: “Unfulfilled potential is one of life’s greatest burdens.” That hit me hard. That is a burden that I carry around with me every single day.  It’s one that gnaws at me when I least expect it, it’s something I even lose sleep over. It’s hard not to look back at my life with MS and feel like the disease robbed me of fulfilling my potential. That’s a really tough thing to live with day in and day out, and I’m sure it’s a burden that many with this disease bear.

My story

I was young when I was diagnosed, still very early in college. Though I’d miss periods of time with exacerbations and other issues, I was still in pretty good condition most of the time. I was one of those early “Relapsing-Remitters” who would, at least appear, to recover between exacerbations (though the damage done in the relapses would eventually add up). So I was able to get through school, start my career, and even excel in it before my disease would land me on disability in my 30s. It really did feel like my illness would be more of an inconvenience at times and something I could manage, something I’d recover from each time. As I said though, exacerbations added up, I went a few years without a disease-modifying therapy (where I felt fantastic at the time, but paid the price for; remember, this disease can be active without you realizing it), then that was it. Even though I’d accomplished a lot, I was still very much on the upswing of my career when my body started going off the rails.

My disease forced me to stop working

With regards to my career, I felt like I was fulfilling my potential. I admit, I was (and am), extremely lucky. I grew up in an upper middle class home, with parents that are still together, who cared about me and my siblings and did all of the things you might expect. I was loved, I had an exceptional education, opportunities galore, and still managed to stay, (I like to think anyway), humble. My parents gave me and my siblings everything you could possibly need to get a good start in this world and at the same time reminded us that we were lucky. They both worked hard to give us what they didn’t have and I’m very thankful for that. In some ways though, that’s one of the reasons this issue of potential hits me so hard. When my disease forced me to stop working, not only did it feel like I had squandered my own hard work, but my family’s as well. That’s a hard burden to bear, one that still stings me.

Feelings of failure

I know, I know, I shouldn’t feel this way, right? I didn’t squander anything, I got sick, it was something I couldn’t control. It’s easy to say that, but when you are in my shoes, it feels much different. In my case, I obviously know I screwed up not taking a disease-modifying medication for a couple years, though that was mostly because of an insurance issue that couldn’t be helped. Even if I didn’t have that snag though, I’m sure I would still feel this way. When you’ve planned and worked for something your whole life, how can you not feel like a failure when in that situation, no matter what the cause? Saying it isn’t my fault doesn’t make me feel much better. Sometimes, I kind of wish it was more my fault, I wish I had caused myself to be in this situation, at least then I could at least own up to it. I could admit to something and be able to move on. Instead, I have this nagging feeling of failure and I can’t even properly assign blame. I can’t properly get closure on it, so it stays with me, and I’m left wondering what could have been.

Moving forward

Thinking about what could have been can really mess with your head. I think it’s especially common for those that have had an illness rob them of their life, well, the life they expected to have anyway. It’s hard to not constantly be mourning what could have/should have been, had this disease not hit me. It really does take an active approach to stop looking back and start looking forward. Even then, no matter how positive you are, no matter how in the moment you are, there are going to be times when you find yourself looking back and wondering. That’s especially true if you are stuck at home and not working. It’s OK to think about it sometimes, but it’s important to remember that the future can still be bright. Sometimes you have to accept that what could have been wasn’t and it’s time to move on. Having MS means we have to work a bit harder and adapt to what life gives us. That may mean we don’t have the life or career we always planned for, but that doesn’t mean our life can’t be even more worthwhile. That said, if you are weighed down by that burden of failed potential, know that you aren’t alone, a lot of us still deal with that, no matter how happy we may look.

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

Devin

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