MS and the Fear of Missing Out

A couple of weeks ago I had a curious encounter with the friend of a friend. I live in a small town. In some ways we’re all at least neighbors. Huddled in a small group at the local grocery store, we were chatting about our experiences with the Women’s March.

I’ve always wanted to participate in protest activism with my girls. However, this remains a bucket list item yet to achieve. I was unable to go into the city to march due to a previous obligation involving one of my grown daughters. My other daughter was unable to attend due to work obligations.

I shared in the group that I took part in the local march. “Aw, that’s all?” said the friend of a friend. I shrugged. “There will be other marches,” I said, and I do believe that to be true.

She looked me in the eye and said, “Wow, you really couldn’t make it a higher priority? You do know you missed the biggest march of your lifetime.” I stared back silently until things got awkward, then repeated, “There will be other marches.”

Others in our group echoed my sentiment. Regardless, I felt lame.

Choosing self over community

Secretly, I was glad I couldn’t make the big one in Seattle. I’d seen the traffic, the throngs, I’d heard the epic tales. My friends were there for upwards of 10 hours, and returned feeling equal parts exhausted and elated. Not my brain’s idea of a picnic.

Crowds are a huge energy sucker for me. My MS leeches energy through cognitive overkill. The sounds, the sights, the constant chatter, and emotional energy—it’s my personal kryptonite.

The march in Seattle was HUGE. Had I gone, even a few minutes at the march would have caused my ears to start ringing, my focus to scatter, my breathing and walking to become slow and leaden. I would have had to leave early with a dead battery requiring about 36 hours to recharge.

How disappointing.

‘Fear Of Missing Out’

One of my biggest challenges with MS is the daily decision-making that evolves around self care. So many times, I say “no” to things I really want to do. Then I have to deal with the FOMO (Fear of Missing Out) regrets later when I hear stories about the events I missed. And I become so angry that I cannot be 100% of myself for 100% of everyone else.

How silly is that? People with MS should not feel guilty about critical self-care decisions. But we do. We beg forgiveness for not having the energy to clean house. We apologize for not being physically able to get out of bed to answer the door. We tiptoe around invitations three weeks out, because who really knows how we’ll feel that day?

I have since learned to call myself “Miss Thirty Percent,” because 30% of the time, I’ll be missing out on something.

I try not to focus on the losses, but they are there, all the same. And sometimes our neighbors, intentionally or not, remind us of them.

Sometimes losses are gains

The local women’s march … Did I tell you it was amazing?

I spent time with so many people that I’ve known for at least a decade. I shared my two extra pink hats with people who were grateful for the gifts. I took pictures, gave and received hugs. I witnessed busloads of marchers coming through my town from other peninsula communities, with their signs and bedazzlement, and felt very proud to be part of the movement.

Afterward, I spent the day at my daughter’s color guard competition. She sparkled, like the thing of power and light that she is. We left with tears in our eyes. Had I gone to Seattle, I would have missed seeing her dance, haul flags, toss rifles, and spin sabers with the best of the best.

I was not “Miss Thirty Percent” on that day, but I was “Miss One Hundred” for cleaving to my own priorities.

There always will be other marches.

I didn’t choose self over community on that day. I chose both. On my terms.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.