It’s Invisible Illness week. This week is dedicated to spreading awareness about chronic illness, 96% of which is “invisible.” Explaining chronic disease to “normies,” isn’t always the easiest process.
Many of us come from a background where our symptoms were dismissed for years, misdiagnosed, or were told that they were “in your head.” So, not being taken seriously is something we’re sensitive to. Even after a proper diagnosis we still hear comments like, “everybody’s tired,” “you must not want to be well,” “you’re only tired or hurting when it’s something that you don’t want to do/when it’s for me,” “you’re lazy,” “you use your illness as an excuse,” and “it can’t really be that bad.”
I recently stumbled upon a video by Christine Miserandino in which she reads her “Spoon Theory,” something she came up with to explain to a friend what it is like to live with a chronic disease. I think Christine does a good job at demystifying the general day-to-day life of a chronically sick person. As I watched the video, I related to so much to what she had to say. I wanted to cheer that someone else knew that washing your hair and shaving your legs can be detrimental to your day. I have posted the video below, or you can read the story on her site: But You Don’t Look Sick.
The “Spoon Theory” explains why I worry about a commitment that is days away, even if it is the only thing that I have on my agenda for that day. My constant awareness of my “spoons” and of the tried-and-true fact that they can be taken from me at any time is why deciding between activities, even fun ones, is a big deal to me. I know choosing to use a spoon for one thing means that I will not have a spoon for something else. And once I give up my spoon, I cannot change that decision. My desperate desire to conserve my spoons is why I try to plan my day and actions to minimize energy expense. I will wait to get a drink until I have to go to the bathroom. I might ask someone to get something for me when it seems like it would be just as easy for me to get it myself. I’ll decline doing something today because I want to go to dinner with my family tonight.
The Spoon Theory video. Two spoons up!
The ideas in the “Spoon Theory” inspired me to write the poem “Spoon Thief.” Slightly silly, but isn’t that important in life?
For Invisible Illness Week, I also bottled some Spirit reflections in the post: “Deep Breath. Start Fresh. Devotional.” Pictures and music are included to enhance the experience.
Related articles from other sites:
- Question of the Week: Are You Ready to Start Fresh? (ohmyachesandpains.info)
- A personal experience demonstrating the effects of chronic illness on time management: At last (mynewstrangelypeculiarblog.wordpress.com)