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Shared experiences: People don’t need to “get us” to get us

By Dan Digmann

It is natural and powerful to gravitate to others who can relate to our lived multiple sclerosis experiences. But here’s my question for you: Are we missing out on a broader view of who we each are as individuals with MS if we limit ourselves to looking solely at the people in our shared community?

I totally get it: there is something incredibly comforting about finding another person or a group of people who understand exactly what you’re going through with your MS. After all, isn’t this why we:
  • Seek out and participate in-person and online MS support communities
  • Watch YouTube videos featuring top medical experts
  • Listen to podcasts highlighting other MS patients
  • Read regular articles in magazines such as MS Focus

I remember what it was like walking into my first self-help group shortly after I was diagnosed. Six other people already were there — four women and two men. They all were slightly older than me, but I had just been diagnosed. I was 27 years old. 

A few of them used assistive devices, but that did not concern me. The reality was they all also had experiences living with MS, and I had a lot to learn from them. But the person I interacted with the most during and after the meeting was Dave. He was only two years older than me, but he had been living with MS for three years.

Yes, simple math indicated he was 26 years old when he was diagnosed. Just like me, he heard the words, “You have MS” just as he was in the early stages of his adult life. Dave knew what I was going through. He had been there, done that, and was still moving forward as best as he could.

Connecting with others who speak our language and “get us” makes us feel less alone. Gives inspiration. Offers insights. Generates hope. Provides peace. 

You know what also helps? I have found similar levels of comfort in the experiences of people who aren’t living with MS.

Same stuff, different people

I had my Saturday all planned out on a recent weekend. I was going to be so productive in taking care of my graduate school studying, recording a podcast, spending time with my wife, Jennifer, making caramel corn for our Super Bowl party, and getting to bed by 11 p.m.

But when a few unforeseen projects surfaced mid-morning, I didn’t get started on my grad school assignment until early afternoon, homework took twice as long as I had scheduled, we ran out of time to make caramel corn, and we didn’t start getting ready for bed until after midnight.

I mean, what the heck happened there? Are things going slower for Jennifer and me because we both are living with MS? Is something like MS-related fatigue or cognitive issues repressing our productivity?

Not necessarily.

I’m always quick to point out that we shouldn’t give MS more credit than it deserves. And this was one of those moments when I needed to look beyond my MS communities for inspiration, insights, hope, and peace.

In her Harvard Business Review article, This Is Why You Keep Missing Deadlines, author Kristi DePaul addresses – for members of the business community – the things that stand in the way of completing tasks within their targeted times. She highlights a phenomenon called the “planning fallacy” and the term “optimism bias.” 

Kristi explains, “Research shows that we often underestimate the time and obstacles involved in completing a task even when it directly contradicts our past experiences. This can be explained by our optimism bias — our natural tendency to believe that the future will somehow be better than the past.”


Are you catching this? Here is an article that has absolutely nothing to do with MS that is explaining something that can totally tie into our experiences in living with this disease. My takeaways:
  1. Even people who don’t deal with MS realities get blindsided with unforeseen challenges and fall short in accomplishing what they set out to do.
  2. It’s not a naïve notion to think that things will be better in the future.

And for as much as it is pivotal that we as people who are living with MS reach out to and connect with others who understand our realities, there is a lot to be said about also lining ourselves up with those who at first glance don’t directly “get us.”

Because when we share the same kind of life experiences with people outside of the MS community, it can make us all feel even less alone.