For myself, and many living with chronic conditions and/or disabilities, the word ‘can’ is not as simple as the ability to complete a single task
My conditions have influence over my entire life, it isn’t pessimism, it is a biological fact. Unfortunately, there are things I simply can’t do, like all-nighters, most sports, or working a conventional job. As my illness progresses the list of hard no’s will grow, as odd as it sounds this list isn’t what reminds me of my limitations. By far, the most emotionally taxing chore, for me is curating a daily list of can’s, weighing out whether or not a task is possible in this moment.
This C word is so complicated, anyone with chronic conditions know that your illness isn’t linear, there are variable amounts of spoons on any given day. The wind might change direction and completely alter what you ‘can’ do. Can I go outside today? Can I handle a social outing? Can I do 'the thing' without causing a flare? Can I make a trip home, take another contract, handle an 8 hour day, do this activity without mobility aids? I make hundreds of micro-decisions every single day, analyzing not only how I feel in the moment, but also making sure I balance future energy and engagements.
As therapeutic as a good pity party is, this blog post isn’t about that. When I entered the disabled community I quickly realized that accepting the unpredictable variability of the word can is vital. When we accept and respect the limitations of our illnesses, we are not laying down in defeat but rather practicing radical self-care. Not the scented candles and bubble baths kind of self-care (though that is bliss), but the unpleasant kind of maintenance self-care that just doesn’t make a good Instagram story.
Just because you CAN doesn’t mean you SHOULD
Can I? Technically, sure. I could save a few hundred dollars and not hire movers, but it would land me in the hospital. Taking ‘can’ as a literal measure of ability can be so damaging emotionally and physically. One of the biggest shifts in my quality of life as a disabled woman is knowing that can does not equal should.
Sometimes saying no means missing out
It kills me to not be a person who can’t be relied on, if you call me chances are 90% of the time I am not around. I miss most of the fun stuff, especially if it happens after 8pm; it took me years to be ok with missing out (sort of). When healthy people joke about fomo it’s hard not to be salty, they don’t realize I am always missing out. The difference is they miss an event or two and feel left out, whereas as a woman with a disability I get to go to one or two events and miss all the others.
(Side note - I find the best way to deal with fomo is a social media detox, comparison is the taker of joy.)
Be gentle on yourself
Despite trying to manage all the things, sometimes even the responsible spoonie over does it. I recently dislocated my knee as a painful reminder of this fact. I have spent far too much time and energy feeling guilty or at fault for my flares. It is SO easy to blame oneself for spiraling into a flare. You did it to yourself, you should have known better, or my fav - you deserve this (my mind monkey loves the blame game). Remember to extend kindness to yourself, you deserve it. Be.Gentle.On.Yourself.
Make space for joy
Honestly, sometimes this means choosing fun over adulthood. If you are at all like me, you save the good days for all that responsible garbage like personal maintenance, grocery shopping, laundry, cleaning, and work. Sometimes you are just going to need to play hooky! If your disease/disability makes it impossible to do both then sometimes you just need to choose joy. Live like there is no tomorrow doesn’t work for a sick person, the juggling act of ‘can’ often places fun at the bottom of the hierarchy. We deserve more than that, so even if it’s only one day a year dedicate all your spoons to joy.