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How Do I Navigate “Survivor’s Guilt” with MS?

Reading time | 4 mins

I’ve lived with MS for over a decade. In that time, I’ve met hundreds of other people with the disease and spent a lot of time learning about my personal case of MS — and how it differs from those in my community. After my diagnosis, I didn’t completely comprehend how different each case of MS could be.

In my initial research, I read about a lot of the physical side effects associated with MS, like muscle weakness, the need for walking assistance, difficulty doing daily tasks, and a lot of other really scary things that I just assumed would be part of my future. In my experience, the general conversation around MS usually involves so-and-so’s aunt who needs a wheelchair to get around, or a friend-of-a-friend who’s so sick she can barely leave her bed.

It doesn’t paint a particularly uplifting or hopeful scene. Back in the early days following my diagnosis, I expected that this was what my life with MS would be like too. Although I didn’t know when it would kick in.

But here I am, all these years later. I’m still walking unassisted on my own two feet — in fact, I’m regularly roller skating around on these two feet while I play roller derby. I’ve hiked deserts and climbed mountains. I’ve run a half marathon and wandered countless miles on afternoon walks with my husband. I am definitely not struggling the way that I once thought I would be.

While I am grateful for my current abilities, I also carry around a truckload of guilt about it. It’s like a version of survivor’s guilt, except in my case it’s more like a “thriver’s guilt.”

While I watch so many people in my community decline, I still seem to be doing just fine… and that feels wrong and unfair. How have I been so lucky to enjoy years of good health and better functioning while others’ symptoms seem to be progressing at a rapid rate?

I can’t quite explain what it’s like to stand in a circle of your MS peers and while many are discussing their needs for walking aids or for extra accommodations at their jobs, the only news I have to share is that my roller derby team played three two-hour games in two days and I played in all of them and feel great.

It feels insensitive at best, and arrogant at worst. I feel like a fraud.

And if I’m honest, when I see others in my community decline in health it still scares me to death. Just because I know that these types of physical issues are likely in my future, that doesn’t mean that I’m immune to the fear that accompanies them — and that alone makes me feel like a traitor to my community.

I get stuck in this space where celebrating my health feels insulting to those around me, but sharing my fears about the future makes me feel like I’m treating my peers as a combination of their symptoms, not like real, whole people. The longer I live relatively unaffected by MS, the more intense my thriver’s guilt gets.

Living with MS, but being relatively healthy and high-functioning, often makes me feel like there isn’t a clear place for me in the community. One thing I’ve learned over the years since my diagnosis is that social connections within chronic illness communities often grow the strongest over shared struggles and the need for support.

So, where do you fit when you don’t need that level of support?

I even feel like writing this could be perceived as a narcissistic “woe is me, I’m too healthy” story, but in reality it’s a confession of my fear of what is yet to come.

While each case of MS is so very different, I have yet to really find anyone else who has gone so long as unscathed as I have. I have spent many years preparing myself for what could be headed my way, and while I’m still grateful, the suspense is almost too much. I find that I push myself too far, too often, because I feel like that is how I can show my gratitude for this gift of good health and how I can do things for those in my community who are no longer able.

I sometimes overdo it on purpose because I feel like I should be taking advantage of everything while I still can, but it’s hard to escape the guilt I feel. I have loved all of my adventures, but there may come a day that I will give up the hiking, skating, biking, and unassisted walking. Hopefully, if and when the time comes where I’m not as able to participate in some of my favorite activities (at least without help), I won’t feel guilty about that too.

Even though my guilt and fears can feel overwhelming at times, I try to focus on what I can and cannot control. I can take care of myself and continue to do the things I love. I can continue to show up for my MS peers who are struggling, both physically and emotionally. I can practice gratitude, and keep educating myself and others. And I can make it through another day with MS.

UK/MED/18/0344 December 2018