I spend as little time as possible on social media. Partly because I just don’t have the time and partly to save my sanity. The times I do sign on, in addition to a lot of good discussions of the challenges facing our community, I have noticed a good number of chronic and autoimmune patients labeling themselves [insert-condition-here] warriors.
Warriors. That’s a heavy word. It conjures mythic tales of people fighting for all they’re worth for or against something. And I can certainly see how many of us would feel that way. I did, too, for a long time. But then I started to think about who I was fighting.
In all of those stories we love so much, there is always a villain standing in stark contrast to our hero. It’s one of the reasons we tune in – with few exceptions, the villain is clear and clearly wrong. The mighty struggle looks unwinnable, but at the very point when all is lost, the hero recovers and saves the day. It costs the hero a lot, maybe a relationship or the happy life they have to leave behind. It also makes us feel powerful, like we can triumph like the hero, maybe kick some ass along the way. J.R.R. Tolkien was the modern master of this craft. There is no tale of heroes and villains quite like The Lord of the Rings saga.
But let me ask you, if you are a cancer warrior or an MS warrior or a diabetes warrior, who is your villain? If you are fighting a corrupt system that is slowly killing us through bureaucracy and bleeding us of money we don’t have but need to live, that’s one thing. If you are fighting against your condition, that’s a whole different saga. I get the sense that most of the warriors I see on social media fall into the latter category.
If you are fighting your condition, you will never reach the end of your story. At this moment, there is no cure for most chronic conditions, no end. And without a way to separate your body from your condition, the villain is you. Just thinking about that makes me tired. I have spent a lifetime fighting the better demons of my nature – on nutrition, on exercise, on the authority represented by my providers. Any spoonie can tell you the perils of limited energy. Do you have enough to spare that you can spend it fighting yourself?
Additionally, I just don’t want to be villain in my own story. Contrary as I am, even I prefer to be the hero. Lately my hero has reluctantly acknowledged that my monster – the personified version of all my conditions – is a part of me, not separate. Every damaged, broken, cringe-inducing part of each condition is an organ or a tendon or muscle that doesn’t work right. But they’re still mine. They are me.
In the fantasy space I’ve built in my head, I would love to be a warrior who triumphs over the monster and gets to live how I want. In reality, I’m tired of fighting myself. Moving forward, I will leave the warriors in the stories. I think the label of ‘advocate’ is good enough for me.