Please Stop Saying That My Illness Doesn’t Define Me

“Don’t let your illness define you” is a popular sentiment I hear often. It always makes me feel uncomfortable but I could never quite figure out exactly why until recently. I know it’s meant to be a compliment.

You see me fighting my illness head on and applaud me for it. Here I am in daily pain you can’t even imagine and I’m living my life to the best of my ability. But that doesn’t mean my illness doesn’t define me. In fact, it defines every aspect of who I am. I’m not the same girl I was before I got sick. Sure, I’m still essentially “me” but I’m a different version of who I was. Certain qualities are amplified, priorities got rearranged and I see the world around me through a different set of lenses. Being sick has made me a more understanding and compassionate person. I learned how to empathize, see the good in others and stand up against bigotry of all kinds. I now cherish my ability to finish my education, something I never took too seriously before becoming ill. I enjoy the simple things in life that I previously overlooked or saw as unimportant. I let myself feel. I’ve become sensitive again. I don’t bottle up feelings in hopes they disappear. It’s as if my illness pushed the very core of who I am to the surface, leaving it with no place to hide.

However, not only did my illness change who I am as a person, but also how I live as well. My illness defines the choices I make every day.

“Do I try to eat a little bit of white rice today and see if I tolerate it?”

“I have to cancel plans for the day, I physically can’t get out of bed.”

“Are my symptoms bad enough to go to the emergency room or should I tough it out?”

“Sorry, I can’t go out to eat because, well, I can’t eat.”

“Did I refill my medications and schedule all my doctor appointments I needed to make this week?”

Before, these questions and statements didn’t cross my mind. There wasn’t anything in my life affecting my ability to do average, everyday activities. Now, I make carefully calculated decisions in direct response to how my illness affects me. My ongoing struggling is a constant reminder that a huge piece of who I am is chronically ill. And I don’t view that as a negative thing at all. It’s part of my identity. By allowing myself to be vulnerable and visible with my illness I am given the amazing opportunity to spread awareness. It enables me to help other people who are struggling just like I am know they are not alone. The best gift I could’ve possibly given myself after my diagnosis is the ability to identify and embrace my illness. And I’m so glad I did. So if you ever find yourself wanting to send me words of encouragement, try “you don’t let your illness consume you.” It may seem silly that one little word means something so vastly different, but it does. By saying I don’t let my illness define me, you’re unknowingly devaluing an essential part of who I am as a person. By saying I don’t let my illness consume me, you’re acknowledging my illness is a part of who I am but that I don’t let my challenges hold me prisoner.

I am a daughter, a friend, an activist, an independent thinker and a chronic fighter. All of these things make me who I am and I wear these labels like a badge of honor.


Originally published on The Mighty


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