Fear of Fear of Missing Out (FOFOMO)

Last updated: June 2020

When you have a disease like RA, the “bad days” bring a lurking fear of missing out, like that guy at the bar no one really knew who jumped into all your birthday pics.  (What’s the deal, Chad?) Those bad days, how we dread them, but really bad days are something every living human has to deal with.  We think it means something special for us and swear it comes with a unique dread that is difficult to replicate.  Does it really, though?

Missing out on events due to RA symptoms

You are sitting on the couch with that special person next to you, enjoying a Netflix and chill night (or a PBS night for the older set).  Tomorrow you are going to that party you have been looking forward to for months but when you get up after binging the last six episodes of Orange is the New Black you suddenly feel that twinge.  It’s that feeling you get when you know a bad tomorrow is likely incoming.  Your spirits drop because now you might have to miss the event you’ve been anticipating for weeks.  It’s the event of the season, with a cotton candy machine, a monkey riding a unicycle and Khloe Kardashian.  Or maybe it was Khloe on a unicycle…  Whatever, you just can’t miss it, but now your RA may have made the choice for you.  Ugh!  Everyone on Facebook and Instagram was gonna be totes jelly when you got a selfie with Khloe and the monkey and now you’ll be stuck at home answering the door for your Uber Eats Big Macs in an old Snuggie.  The driver is definitely going to judge you.

For those of you who didn’t get the references above you can just replace it all with “and you know tomorrow is going to suck.”  It’s an emotional roller coaster we all experience and that type of foreknowledge can be devastating.  Throw in the fact that it’s never a one-hundred percent guarantee that you’ll have a bad day just because you feel it the night before, and you have the perfect recipe for driving a person insane.  If we always knew for sure what was coming, we could plan ahead and while it might come with disappointment, there wouldn’t be the undercurrent of uncertainty that supersizes the emotional pain.  When there’s always a bit of hope that things won’t turn out as bad as we suspect, it makes it that much more crushing when the worst happens.  If your friend has tickets to see The Spice Girls and you know you’re going to miss it, you eventually accept it and move past.  On the other hand, if you are hoping to up until the last minute you’ll be able to go, it sucks ten times worse when your friend can’t Spice Up his life.  I was so upset.  I mean he was.  My friend.  Not me.

Dealing with the uncertainty of RA

It took me a ton of missed concerts and parties I heard about the next day to develop a way to deal with the uncertainty of RA.  What made it worse is that it always sounds like the party of the century when someone else tells you about it.  “Dude!  First, we got a free keg of beer, then Dylan jumped off the roof and did a triple flip into the pool and put it on Facebook and then Ashton Kutcher saw it and showed up with a bunch of super hot girls and they all were wearing bikinis and it was insane!”  In reality, it was just a bunch of dudes sitting around drinking discount beer and watching reruns of That 70s show after stepping in a big puddle but it doesn’t make you feel any better.  So I had to learn to accept or else I’d be consistently heartbroken and wondering “what if…”

Facing the fear of not knowing what to expect?

Down to brass tacks: how do I face the fear each day of not knowing what to expect?  Well, the answer is simple – I don’t.  I just decided one day to give up trying to know the unknowable and throw caution into the winds of fate who is fickle… and other mixed metaphors.  You get the point.  Does that mean I don’t have fear anymore?  No, of course not.  Fear is a natural response to the things that we go through as RA patients, but really it’s just part of the human condition.  I realized that if you are afraid every day as someone with chronic illness, how is that any different from living each day afraid as a “healthy” person?  You can find ample reasons to fear what might happen tomorrow even if you don’t have a crippling illness – you might get hit by a bus, you might lose your life savings, you might spill soda on your new laptop and not be able to clear your search history before you bring it the repair shop – the list of stuff that’s definitely theoretical and never happened to me is infinite.  Most “healthy” people don’t think about those things each night before they go to sleep, so why should we spend all that time worrying about our potential issues?  Just because we are ill doesn’t mean we have more problems than other people, it just means we have different stuff to worry about, and that’s the real crux of it.  Need an example you say?  Ok how about this: If you are on disability you have health insurance pretty much guaranteed but someone “healthy” and unemployed have to worry.  Get it?

If that argument doesn’t do it for you how about this: the more you have going on in your life, the greater the chance for new adventures.  When my RA gave me lymphoma I can honestly say I wasn’t worried.  Scared, sure, it’s cancer for God sake, but worried?  Not really.  Why?  Because a long time ago I learned a phrase that I repeat to myself: “…and another adventure begins.”  Cancer?  An adventure?  Well, think about it.  On an adventure, you meet new people, go new places, and learn things about the world and yourself.  Does that not apply?  I think you know it does, and if you need proof just know I wouldn’t be here writing for you if it wasn’t for cancer, which led to divorce, which led me to Health Union and back to writing.  Every day you stay on the sunny side of the dirt is a chance for a new adventure.  Might you miss out on some things?  Sure, but you’ll also not miss out on a whole bunch of other stuff.  Now I have go get Spice Girls tickets.  For my friend.  Not me.  Talk soon.

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