In a previous post I discussed dealing with the judgements of other people in relation to invisible illnesses. My biggest challenge as a spoonie isn’t the way others think. It’s a lifetime of social conditioning that still makes me think that self-care is laziness or weakness.
This came to a head in the corporate world. I had to jump through hoops to get any sort of minor accommodation. It didn’t matter that the quality and quantity of work I was doing was top-notch. I was handling my own cases, and picking up the slack for teammates that had fallen behind. Asking for an accommodation was treated as if I were seeking permission to slack off.
The thing is, even free from the corporate overlords, I do that to myself. I have to justify things that make my life easier. There’s a voice in the back of my head telling me to suck it up.
Be Kind to Yourself
What makes this hard to overcome is that fact that other people do judge you. I get defensive about being hyper-productive is to offset the stigma. I know that’s it’s terribly ableist, but I still tend to brag about the fact that I’m more productive than a lot of folks that aren’t spoonies. The problem with that is, it creates the impression that other spoonies should be able to do what I do.
To offset this toxic mindset, I’ve had to schedule downtime. At this point I have the number of spoons I need in a day, and how much I know I’ll be able to do, down to a science. My bullet journal is set up to help me maximize productivity, mixed in with regular periods of rest.
Do I still work too many hours in a day? Absolutely, but that’s a matter of economic reality rather than chronic workaholism. What I don’t do is work a 10 or 12 (or 14 or 16) hours consecutively. I take a nap nearly every afternoon. There’s time in my schedule set aside to read, meditate, and listen to music. It’s a much more sustainable, and pleasant, way to live.
My Biggest Challenge as a Spoonie
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About Simplify – Create – Thrive
About Berin Kinsman
Berin Kinsman is a writer, simple living minimalist, and spoonie. By day he works as the owner/publisher at Dancing Lights Press. An American by accident of birth, he currently lives in Finland with his wife, artist Katie Kinsman.