We Must Do Better: A Message to My Fellow Spoonies

Listen up, fellow chronic pain and chronic illness warriors. We need to have a chat. You are my people, you are my soul. I feel you within my tired bones and recognize my imperfect face tucked away in your scars like intricate origami. You remind me that my brokenness is beautiful and that I am more than my pain. But recently, you failed me.

A few weeks ago, I was shamed by a group of people that share the same diagnosis as me. I won’t get into the details because they truly aren’t essential to the point I am trying to make, but the headline is this: about 50+ people made me feel less than because of how I spoke about my pain. Keyword here is my (pain). They compared their bad days to mine, and made me feel like I didn’t deserve a voice because my day-to-day didn’t mesh with theirs. And I am not OK with this, are you? We are on the same team and this is not what teammates do. Pain, suffering and fragility are not a competition. No one is a winner in the game of pain. We all lose.

To clear up any confusion around the subject, I want to say that I am not hurt by the actual criticism. I am wounded by who the criticism came from. I realize that by putting myself out there in a venue such as this, I willingly fling the floodgates of my life open far and wide. I acknowledge and accept that. My vulnerability invites you in and you choose whether or not you’d like a seat at the figurative table that I’m serving. Interested in choosing another table? Totally fine by me. That’s how life works. But don’t come at me from a place of competition. Don’t belittle my strife or insult my humanity when we breathe the same, harrowing air. I have a hard enough time catching my breath in a world that can make you suffocate in an instant. And breathing is one of the only constants that I can hold onto these days. There is enough air for us all.

We can do better. We must do better. Because if we don’t, we give the rest of the population who doesn’t share our reality the perfect excuse not to care. We give them the ammo they need to be apathetic, to make us feel guilty when we say “no.” We feed the beast. We squash the brittle seeds of empathy of which we have worked so incredibly hard to plant and nurture and sow — and I want to see those babies grow!

And I don’t know about you, but I am so damn tired. Tired of convincing people that my pain is real, that I should be taken seriously. I am heavy and exhausted and weighted down by life. So let’s do each other a favor and lift one another up. Let’s band together and use that interaction as an example of how we wish to be treated. Let’s stop feeding the beast with trolls — we have enough of them already (Exhibit A: literally the entire internet).

We can do better. We have do to better. I’m counting on you because I can’t wage this war on my own. Your voice matters, and I hope you can respect that mine does, too.