Battling Battles

A word on "battle" or "war" terminology as it relates to illness.

Hi readers,

My former workplace was discussing the use of battle terminology and I was reflecting on how it felt for me… and this blog shares my thoughts on this metaphor.

In staff discussions, I thought this resonated, "A study published in 2015 by scientists from the Johns Hopkins Kimmel Cancer Center concluded that 66 percent of the variation in adult cancer risk across tissues can be explained by “bad luck,” and are beyond anyone’s control. The metaphor of a ‘battle’ does not consider the randomness," according to a piece in Scientific American. (edited)”

And yet, labeling myself as a fighter is galvanizing… so let’s unpack this:

A word on terminology

I use battle terminology often. I find it motivating. It also fits my particular diagnosis. The complement system in my immune system (the one in my body on the aggressive) is a brute squad. It literally fights invaders, but also unfortunately “the good guys” like my own blood cells. 

Feeling like a “fighter” or “warrior” also counters the labeling of a sick person as “patient.” Being patient feels like a request of all folks with illness as I’ve mentioned before. Like the world and the word requests you to now be the embodiment of patience- which can feel very powerless and frustrating. We are expected to just sit and wait and endure. Being a patient patient is very difficult when your life's on the line.

Also Simon and Garfunkel’s The Boxer was playing literally as it all went down in the hospital for me, so something truly metaphoric was going on at a celestial level.

You may quote me about only me in the use of this “fighting” metaphor.

But what you can’t do is apply battle metaphors to anyone else. Not everyone’s disease is a war. And when people die, they don't lose a battle.

They die because of, essentially, bad biological luck. 

Ceasing treatments is not weakness or surrender. It’s incredibly brave to stop treatment. It should not be framed as a failure to decide to avoid medical interventions. It’s simply a choice a person makes for their well being.

I am often frustrated by the way “well” folks characterize illness or insert themselves or speak in lieu of folks with illness. I know it’s incredibly well meaning on most occasions, but I have the ability to speak for myself. Don’t take up space where someone with the illness should be speaking. 

I can only speak to my narrative. I don’t presume to speak for everyone. 

Sure, there are similarities everyone feels connected to who battle chronic or acute illness, but generalizations about “beating” disease are likely more harmful than not.

We don’t control our bodies fully. You can avoid cigarettes and still get lung cancer. There’s much we can do, but there’s a divide between real control and the tiny cells that create us. We do contain multitudes. 

It’s not my fault I have a rare chronic disease. No amount of working out and eating kale salad would have changed that fact. It woke up one day inside me. Bad luck.

It’s not within my power to beat this disease that has no cure.

I call myself a fighter because what I went through in the hospital was an ordeal. Showing up to each treatment is my fight. Stopping my brute squad of disease in my complement system  that attacked my organs and cells feels like a physical conflict. The imagery accurately describes my situation and helps to understand what’s happening as well as motivate me.

That is my story. 

And I can’t tell you if it’s particularly helpful, but for now it serves me.

But when I die, I don’t want anyone to say I lost a fight, battle or war.

Because that’s not accurate. I couldn’t negotiate a truce if I wanted to. My disease doesn’t have diplomacy. It’s just a blip in my body. A disregulation of a system that leads to organ failure and death if untreated. It’s idiopathic and I have no idea how I got it.

Perhaps a war analogy is essentially a failure of creativity.

 I’ve always used a roller coaster analogy as well, but you could compare it to the discord in an orchestra where the horn section overtakes the strings. Or a storm that breaks a dam…

Perhaps when I die, the ride just ends. The musicians grew tired and the song was over. The storm has passed.

Patience ends.

Thank you to Richard Burwick, MD and Roy Lenn for your founding level donation.

If you’re new here and wondering, “what happened to this lady?” read The Fighter Still Remains Part 1. xo