Pieces Of Me: Forging A New Chronically Ill Identity
I am a student. I am a figure skater. I am a friend, a daughter, a writer, and a coach. And now, I am someone with ankylosing spondylitis.
Since my diagnosis, I’ve felt discomfort regarding my identity. Do all the parts of my identity exist in the same way, plus a new addition? Or does my new role as a chronically ill person fundamentally alter every aspect of myself? I am still navigating this and merging my identities into one complex, chronically ill identity.
Learning to merge them all
There are some components of my identity that have been easy to merge with AS. I am still a friend — now, a friend who deals with pain while socializing. But other aspects of my identity conflict with my illness; they rub against each other like a pair of mismatched, screeching metal gears. To be a figure skater means to be active, to be healthy, and to move fluidly. To be someone with AS means just the opposite. They are pieces from two different puzzles, bending in an attempt to fit together. Can these two major parts of my identity co-exist?
The answer is yes. I am no less a figure skater, coach, or student now. My chronic illness has not booted any part of me out of the picture, though it has added a layer of complexity to how I view myself.
Sometimes it's hard for people to understand
It also affects others’ view of who I am. I’ve encountered people who are confused by my identity — I mention that I live with chronic pain, to which they respond, “but wait — aren’t you a figure skater?”
I think the human brain prefers a strict binary. There is young or old, healthy or sick, able-bodied or disabled. It’s one or the other. The image of a young athlete can’t coexist with the image of a sick person. I hope this will change as awareness of invisible illnesses increases, but we aren’t there yet. So I am faced with a decision — which parts of my identity do I choose to reveal to others?
People have a certain perception of me
If I open up about my disability, it clashes with most people's perception of me. How can I be skating multiple times a week if I’m sick? If given the opportunity, I explain that I’m only able to skate due to biologic injections and other medications, that I have to modify many movements due to pain, and that most of the time, I am still in pain while skating, coaching, or doing anything else. But, more often than not, I don’t get that opportunity to explain.
I move throughout my daily life — going to class, working, and socializing — knowing that my true self is not the person that exists to everyone else. At work, I am treated as any young, healthy person would be treated, sometimes asked to do physical tasks that older coworkers can’t and told to “wait until you’re my age and you’ll be in pain”. They have no idea that my life revolves around pain. But how are they supposed to know?
I choose who gets to know what
Like I mentioned, I choose when to reveal parts of my identity and to whom. Of course, my very close friends and family are aware. But it is often easier to keep quiet and assume the identity of a young, healthy person; people get uncomfortable and confused when I add in the complication of my chronically ill self. So instead, I live as a student and a figure skater and a coach and so on, knowing that sometimes, the chronically ill part of me will be hidden — inflicting its fiery, ugly wrath from behind a curtain.
And so, here I am, caught in a tug-of-war between who I was before AS and who I am now. I have come to terms with my multifaceted self, but still struggle to articulate my identity to others. I now, and always will, have an identity that spans multiple concepts and stereotypes. Combining these identities is like constructing a puzzle that was never meant to fit together. I haven’t quite figured out how to show all of me to the world yet, but I know my close friends and family love my mismatched pieces.
How long was your longest flare?