Why I Don't Call Myself a Chronic Illness 'Warrior'
I just want to say before I continue with this story, I’m not against people referring to themselves as “chronic illness warriors” or describing their “fight” with their illness. It’s just that this language doesn’t work for me. Here’s why.
The words “fighter” and “warrior” are often linked with our response to illness. Even when someone has something like a simple cold, they may say, “I’m fighting a cold!” This makes it sound like we’re in a war zone with our bodies and sheer willpower will get us through the day.
I’m chronically ill, but I don’t think that makes me a “warrior” or “inspirational.” I’m just Naomi and I just happen to be disabled and living with a set of chronic illnesses and symptoms. Yes, life on a day-to-day basis is a struggle. It takes a lot of effort to do everyday tasks and I require help with things. But on my bad days when I can’t get out of bed, it’s not because I haven’t tried hard enough or “lost the battle.” I’m simply not well enough to get out of bed.
When it comes to chronic illness, there isn’t an “after” or “when I’m well again.” It’s a journey of grief, acceptance and coming to terms with the life I have now, and learning to go with the ups and downs of good days and bad days and in-between days. I am trying to let go of the life I had planned out, especially when it comes to my education and the career I’d always wanted (and I still hold out on the hope that one day I can return to it). Some days the grief for that lost life I planned is still very raw.
When I first got ill, I did feel like I was fighting against my symptoms, which at the time were “medically unexplained.” I was hoping they would just be temporary, but eventually, I had to accept my reality. When I was fighting against my body, I was just stressing it further and probably making myself more ill in the process.
Accepting my disabilities has been hard, and it took a while for me to refer to and see myself as “disabled.” Many times I haven’t wanted to accept the fact that I will be ill for the rest of my life to one degree or another, and sometimes I find myself hating my illnesses or feeling like my body is “broken.”
Of course, it was and still is really difficult, especially when I still feel so young to be dealing with being chronically ill and seeing my life and future turned upside down by something I never planned for or chose. It’s especially hard seeing people my own age, like my brother, doing many of the things I planned and want to be doing and achieving. This is where I’ve found it helpful to find friends around my own age to talk to about being young and disabled in a healthy and supportive way.
To me, the word “fighting” sounds exhausting. Sometimes you just want to take off your armor and talk about how hard it is and how it sucks. When this happens, I don’t want to be told I’m inspirational and to “just keep going!” or “battle on!” I just want someone to listen. This is where I’ve found therapy or talking to friends with disabilities helps. One of my friends shared this quote: “Just keep swimming, and when you can’t swim, just float.” Sometimes I just want or need to float for a while.
I’m not totally against the use of terms like “warrior” and “fighter” and I will use them in my hashtags on social media. I like how these terms unite those living with chronic health problems — like the community here on The Mighty.
Giving up the fight helped me accept that I was chronically ill as opposed to continuing a battle I was never going to win. It was the right choice for me.
Getty image by agsandrew.