On a notecard briefly answer one of these questions: what uses up your energy (spoons) the most; how do you most like to expend your energy (spoons)?
If you’re not familiar with the Spoon Theory, I encourage you to read this post from butyoudontlooksick.com. It’s well worth the read. But for the sake of this post, I’ll briefly summarize this whole spoon business.
Essentially, spoons are an arbitrary measurement of energy. “Healthy” people have unlimited spoons to use during the day, but people dealing with chronic pain have a limited number of spoons. As a result, seemingly ordinary tasks like taking a shower or going to the grocery store are weighed against the amount of energy, or spoons, required. Some days you have more spoons at the ready, and can get more done. Other days, you barely have enough spoons to get out of bed. If you ever see #spoonie included on a tweet, now you know what’s going on.
In the grand scheme of things, the Spoon Theory can apply to anyone, to any patient as a way to convey the struggles that come with getting by day to day. With that understanding comes the collaboration at Medicine X. Attendees decorated spoons in the image of the thing that drains their spoons on a daily basis. What consumes you as a patient advocate? What keeps you up at night as a patient? What worries you the most as a caregiver? If you’re honest with yourself, these are incredibly intense questions that can cost a number of spoons to just contemplate.
My spoon was decorated in the spirit of My Diabetes Secret.
I know there’s nothing I can directly do for the people submitting secrets about suicidal thoughts. I know I can’t reach out to help the people talking about their depression. But these people with diabetes have confided in me – albeit on an anonymous Tumblr. I suppose it’s just been my nature to want to fix everything. When I read these submissions, I wish there was more I could do.
I know the act of sharing can be cathartic. I know that hearing, or reading “me too” can be the tipping point for someone to find the path. And I know there’s a resources page created for the people who need more direct support, if they are willing to look for it. But I still worry that it’s not enough. I still worry that it will never be enough.
And so, each day I dedicate a spoon to the anonymous entries on My Diabetes Secret. I may never be able to help in the ways I wish I could, but that doesn’t mean I will ever stop trying to help.
Disclosure: As a member of the ePatient Advisory Board, my registration fee for Medicine X was covered by the conference. I’m writing about this stuff because I’m incredibly passionate about it, clearly – not because there’s a feudal obligation to do so.