The chronic illness community deserves a better word than “FOMO,” the commonly used acronym which stands for Fear of Missing Out. This was determined by the wonderful Meggie (of @MeggieandMS) when I posted the above image on my Instagram story a couple of weeks ago. I was trying to make light of the fact that for the first time ever I was on a ski trip, yet there would be no skiing. At least not for me. This post was just one example of my efforts to convince myself that I was perfectly fine with spending most of the week alone while everyone else enjoyed a pastime in which I could no longer participate.
Meggie called me out instantly, declaring that the word was woefully inadequate. It’s not about fear, she said, but rather sadness, angst, and even rage at the nature of chronic illness and having so many things taken away from you, forever. Meggie was spot on and reminded me that my experience isn’t unique and runs rampant through the chronic illness community.
After returning home from a fun, albeit trying, trip, I did what I do best: thought over and over again about everything I wished had gone differently, or all that I could have done differently. Still, as much as I wanted to be able to happily exist in the middle of a sporty world of which I am no longer a part, no number of spa appointments or shopping trips could distract me. I couldn’t get the thought out of my mind for long, which I guess is why it came up during my last acupuncture session.
My wonderful practitioner, Noell (@LovedBasedMedicine)* patiently helped me understand that the grief I felt because I couldn’t ski is perhaps less about missing out than I originally believed, and is rooted in my desire to meet the expectations and needs of others. You see, for those who don’t know me, one of my less desirable qualities is that I’m a total people pleaser. While I’ve known this about myself for a while, I never would have connected it to this situation had Noell not pointed it out. Sure, I wanted to ski, but I also wanted to be a “non-issue” for everyone on the trip. Doing something different from the rest of the group made me feel like an inconvenience or a bother, whether it was true or not.
There’s so much about my chronic illnesses that I cannot change, and I’m working hard to accept those things. And while I don’t think there’s a possibility that I’ll ever be able to ski again, I want nothing more than to be okay with that. I don’t want to be a victim to anything, and that includes vacations that should be nothing but fun and relaxing with people I love. But to do that, I have to work my way through all the crap and get to the root of why those feelings are there in the first place.
Now that I think about it, I’m not sure there is a universally appropriate word for FOMO, at least not within the chronic illness community. And I’d bet that the same is true for everyone else. If you do think of a better word, however, or can make a good case to keep FOMO around, I’d love to hear it.
*Y’all, I am all about the shoutouts today!