Is FOMO a Symptom of Lupus?

Since becoming sick with lupus, I've needed to sleep 2 to 3 hours more than my able-bodied peers in order to function. In addition to fatigue and skin rashes, lupus has also given me a permanent case of fear of missing out (FOMO). Is FOMO an invisible symptom of lupus?

It's 10pm, and I've just finished rehearsal. I pack my viola and sheet music into my case, then head backstage and to the stage exit. In the parking lot, a handful of my colleagues in the orchestra are chatting with their violin and cello cases strapped to their backs. One of my friends from the violin section waves and asks if I want to join them for a round or two of drinks. I want to say yes.

Relaxing with my friends while laughing at nerdy music jokes and complaining about the conductor sounds like the perfect end to a long day. But then I remember my schedule for tomorrow: a children's concert, which is always at the ungodly hour of 9:30am.

Missed opportunities with lupus

FOMO, or “fear of missing out”, often feels like a secondary symptom of lupus. Many lupus patients have to give up things we once loved after we get sick. Before lupus, we might have enjoyed physical activities like hiking, playing sports, or biking. We might have stayed out late with friends or enjoyed early morning sunsets.

While we may still be able to participate in these activities to a certain extent, we often can't enjoy them in the same carefree way we did before getting sick. Having lupus means we have to pick and choose which activities we partake in, which means we often feel like we're missing out.

Lupus limitations

In my career field, classical music, socializing is as much a part of career advancement as is practicing your instrument. Colleagues that I've become friends with have passed on work to me over Facebook or through text message. Going on a coffee date with someone I've met at a gig frequently leads to more gigs. I often catch myself wondering if I would be further along in my career if I could stay out late making new friends after rehearsal rather than going to bed early so I'm well enough to perform the next day.

When I was first diagnosed, I'd frequently push past the limits of my body's new limitations. I'd stay out late without considering the consequences. I'd peel myself out of bed at too early hours in order to study for tests or to practice my music. It took me far too many years to realize that the result of pushing myself was not more fun or even increased academic success. It was physical and mental exhaustion, flares that lasted longer than they should have, and the slow breaking down of my body.

What I don't miss out on

Over a decade after first becoming sick, I wouldn't say that common sense has completely cured me of my FOMO. I still feel the occasional longing to not live life like an old lady. I still experience the odd pang of jealousy when my friends stay out late, travel, or do the type of activity that is no longer carefree and consequence-free for me.

But thirteen years with a chronic illness has taught me to choose my battles. Every once in a while, I can stay out late or accept an early morning gig. But when I turn down invites or opportunities that conflict with my goal of staying healthy, I remind myself that the one thing I truly never want to miss out on is feeling well.