Menu
As someone with a limited capacity for physical endeavours, I must choose the activities of my day wisely and conserve for the unexpected. When you invite me to that event and I say maybe — it literally means, I probably won’t know until the day before or the day of, whether I have the spoons to make it to your event.
I often experience what we call FOMO — the fear of missing out. I sometimes push myself to do things, simply because I want to be there for the experience. I may go to a party, but only sit in one room the entire time, interacting with those who choose to also be in that room at any given time, missing out on other aspects of the party, but at least I was there, right? I may go to a performance but have to leave after the performer I came to see, or leave before any encores. I may show up at exactly the time of the movie and be the first to sneak out at the beginning of credits — although, in this case, as someone who also uses a mobility device, it often isn’t easy to ride the wave of others trying to get out first, and my fatigue may take a back-burner to the physical reality of a too-big crowd.
This world we live in is geared towards to the able-bodied. There are some places where concessions have been made — like ramps and elevators, accessible parking, accessible bathrooms — but they are the exception, not the norm. On any given week-day, and week-end day as well, I am headed to bed for 9 or 10 o’clock. Sure, I’m an early riser, up with the sun, but my capacity wanes in the evenings and I can only rarely
attend late events — though this seems to be when so many people do their extra events, late dinner parties, birthday parties, concerts, etc.
But I still want to be invited! I may have to say no to the next half dozen times you ask, but maybe the 7th outing falls on a good day for me. Or maybe it’s a picnic on the edge of a park with shade, so I can get my mobility device to the location, won’t burn in the sun due to medications I’m on, and don’t have to go too far into the park. It’s difficult to ask for these considerations. Usually I will ask for a few, but never all — will there be seats I can use. Will there be an accessible washroom. Will it be a day-time event. Will it be close to parking. Will it not be too much of a crowded/loud space, so I can hear people talking to me. When you live with multiple ability issues, it starts to get tiresome for those planning the event. So I choose my battles!
But I DO choose my battles. I don’t want life to pass me by. I want to be included, and feel like I’m a part of my friend group. I want to know the inside jokes because I was AT the event where they started. I want to add to the joy. I want to be present!
When we’re afraid of missing out on an event we can feel worthless, like the addition of us to a group setting isn’t really important, no one cares if we’re there or not. But that simply isn’t true. It’s the negative self-talk at play. People do care about you, or you wouldn’t have gotten the invite in the first place! Pumping yourself up can help alleviate some of the FOMO, but having others encourage your attendance is more helpful.
Remember, your friend who doesn’t always show up may be struggling with more difficulties than you know — keep inviting them!
If you’re someone living with an invisible or visible disability, know that I have experience living with both and I’d love to be on your team, problem-solving together and learning how to build capacity into the structures of our own lives or how to deal with the emotions around not being able to attend all the situations you want. Reach out and let’s see where we can take this (slow) wild ride!
