Almost a year and a half ago, I was diagnosed with a chronic illness. It’s not something you can see – most people, including most friends and family, probably think of me as a healthy 30-something. I think few people beyond my spouse realize that I’m struggling to function every moment of the day, pushing through a fog of fatigue and pain to get my work done, take care of myself and my household, and enjoy where I can.
Getting diagnosed was frankly a relief, after the long and frustrating journey I’d been on with doctors and physical therapists and imaging and yet more specialists. But another journey began at that point, because I couldn’t keep living my life the way I had before, constantly exhausted and hurting.
One of the vagaries of my illness is the difficulty of, well, going to places. If you’re familiar with spoon theory, it takes an extra spoon just to leave my house, and more spoons if I have to drive. Or if there’s a late-night activity that means I’d get less than 9 hours of sleep, forget about it.
That means that mixed with the revelation and relief of my diagnosis, was the grief of losing my favorite hobbies. No more late nights for Latin dance. Weekly commitments, like soccer games, yoga class, or choir practice, had to be cut. Traveling had to be rarer, slower-paced, and more comfortable, meaning much more expensive (and no camping!).
It felt like my world had shrunk to my desk, my couch, and my kitchen. There was a period where I didn’t do much for fun beyond books, video games, and food.
But slowly, with acceptance of my limitations came ideas for channeling my passions in other ways. I can stay musical – by learning to play the ukulele and sing from my living room instead of at the synagogue. I can stay sporty – by walking to a local field and kicking a soccer ball around with my husband and dog. I can dance – if I’m willing to be silly, blast reggaeton in the living room, and jam out by myself. I can stay social online and on the phone. I learned to love working from home, and I’m so grateful to Hispanic Access that that was built in from the start.
Does any of this sound familiar? I imagine many of us are undergoing similar transformations.
If there’s any wisdom I have to share from my experience of chronic illness, it’s this: let yourself go through the process of grieving your old life, and be kind to yourself as you do. It’s right to be angry – it’s an awful situation! It’s right be sad – look at what you’re letting go! But try not to get your heart set on a date for life returning to normal, because it almost certainly won’t happen when and how you expect it to.
Don’t think of your life and your doings as a choice between how things used to be, and how they are now. Instead, think of it as a choice between waiting for something better to come around, and doing what you can to make things better now.
Only by accepting circumstances
By Shanna Edberg, Director of Conservation Programs