I’d been avoiding Twitter because my own self care requires distancing from drama. In fact, I only participated because of a stomach bug: Feeling Oh-So-Sick allowed me to ditch the positive attitude and “this chronic illness happened to me for a reason” mentality and embrace the support of a community who gets it.
I shared stuff that felt icky. Yet everything I said was met with love and support. Total strangers, reaching out, sometimes across oceans, to say, I get it. I’m sorry. Been there. Done that. Try this. Here’s a (soft) hug.
We’re a diverse cast, us spoonies. (If you’re not familiar with The Spoon Theory, learn about it here.) We come from all backgrounds and all ethnicities and all career paths. We’re nurses and activists and advocates and artists and lawyers and bank tellers and mountain-men. We’re single, taken, complicated, moms, dads, brothers, sisters, teenagers, grandmas, straight, queer, non-gender conforming. We’re rich and we’re poor and shades of in-between. And we are, as individuals, so much more than what’s written on our medical charts.
The support I received led me to a single hypothesis: Spoonies are here to save the world.
When Your Body Fails You
When you live with a chronic illness, you get cracked wide open. A fundamental piece of you—the body you inhabit—has taken over your life. You may not physically bleed, but the wound is there and the wound is deep. Deeper than I ever thought I’d admit.
Spoonies have every reason to be miserable ass people. Physical pain, dependence on medications that make us puffy and damage our kidneys, lifestyles that come to screeching halts, issues that poke holes in our self-esteem. Fear abounds, with the ever present thought of, what’s-my-body-gonna-throw-at-me-next?
And yet, we’re not miserable. We’re kind. We’re creative. We’re supportive. We’re open. Each and every one of us is in the varied stages of learning hard life lessons.
Chronic illness teaches us things everyone can benefit from. We understand our medications will only take us so close to health. We embrace self-care, nutrition, meaningful work, spiritual guidance, and living a creative life. As a group, spoonies are (as the kids say), mindful AF.
Even our doctors are taking a cue from us. I’ve written about mindfulness programs for physicians twice this month. Mindful physicians find more joy in life and with their patients. They are far less likely to experience burnout in their careers, and this mindfulness helps them provide better care.
Chronic illness teaches spoonies how to be compassionate human beings. We strive each day to who compassion for our neighbors, and we struggle each day to be compassionate with ourselves.
It seems to me that this world could use a whole lot more compassion.
Together We Can
As individuals, spoonies only have so much to give. I often feel defeated when I think of all the ways I would be part of X or Y or Z … if I were healthy.
But together we’re a powerful force. The love we provide to each other, the compassion we teach to those who love us—that’s the kind of stuff that changes things. That’s the kind of stuff that this world seems to lack. Maybe that’s, in part, the reason we’ve found ourselves in the spoonie role.
Thank you, spoonie community, for being the love that this world needs. Thank you for your unending support and for sharing experiences that make us feel less alone. Thank you for teaching doctors what patient-centered care really looks like, and for teaching us as individuals that we’re so much more than our diagnosis.