themighty logo

When Chronic Illness Makes You Unsure of Who You Are


My significant other and I met at band camp when we were tweens. Yes, band camp. (Go ahead, soak that in, and say your peace. We’ve heard it all.) It was a time in our lives when our days revolved around percussion instruments, all-you-can-eat salad bars, and embroidered, powder blue polo shirts. Life was simple for many reasons, but particularly because I wasn’t sick yet. I had never had a brain-busting migraine, had never experienced temporary facial paralysis, and I had no conception of what it would be like to live with an invisible disability. Little did I know, in just three years, my entire world would wring itself out like a perennially wet sponge.

When I was young, I spent my days dreaming of what it’d be like to grow up. Perhaps you did, too. The “golden” years that would be chock full of freedom, fun, security, and full-blown confidence in who I was — as if the act of aging dips a person like a soft-serve ice cream cone into the multicolored sprinkles of stability. Magic! As if simply getting older solidifies what you stand for, what makes you sparkle, or what makes your knees buckle. Because when I became an adult… I’d never change, I thought. I would look in the mirror every single day and know who I was, I hoped.

But here is what we aren’t taught — growing up is exponentially more difficult than it seems. With more years, comes more responsibility and stress and mood-shattering decisions. And that when life takes an insurmountably challenging detour and you are diagnosed with a chronic illness that cannot be cured (let alone managed), that even as you age, you can actually lose the ability to stand strong in who you are day in and day out. In fact, I’d dare to say that I am more confused about who I am now than I was 10 years ago. I learn a little more every day.

But let’s go back to band camp. If my partner and I wouldn’t have treasured the tip-tap of snare drums, we wouldn’t have been in the same place at the same time. That summer changed the entire course of our life — it led to friendship and dating and break-ups and silence and spontaneous rekindling and big, bold love, all layered and weighted by the complexities of life and illness and family and heartache and loss.

Our little nothing led to a little something which spilled into a big everything. It led to us.

The same framework can be applied to how I get sick in the first place. What was once a singular symptom (ear infection) led to a devastating emergency surgery (ear/skull/brain) which would ultimately change the course of my life (daily migraines for 15 years + zero vestibular function). But without it, I wouldn’t have the big messy everything of a life that is entirely mine. Without that trauma, I wouldn’t have pushed myself to be “normal,” I wouldn’t have tested my limits, and I wouldn’t have ever developed a true grasp and understanding of what it means to show and practice empathy. I wouldn’t have realized that how you feel physically doesn’t define who you are mentally or emotionally. I wouldn’t have learned that at the core of your living, it is always OK not to be OK.

I still struggle every day. On my good days, I try my best to be compassionate and thoughtful. I tend to root for the people who don’t ask for it. And I like to believe that everyone is capable and made of goodness until they prove otherwise. But thanks to Michigan’s can’t-make-up-its-damn-mind in regards to summer weather, which drastically throws my disability and chronic pain for a loop-de-loop, I have been waking up a haggard shell of myself lately. And for me, that doesn’t mean that I don’t recognize the fiber of my worth. Or that I am confused about what and who drives me to get up in the morning. But for me, that means that chronic illness has turned me into a shape-shifter. On some days, it’s like I am meeting a new version of me (and spoiler alert: I am not always her biggest fan).

So to you, reader, I ask you this: what was your little nothing that led to a little something that catapulted into a big everything? I’d love to hear your story, too. I’d love to be your biggest fan. Because let’s face it, growing up can royally suck, and we could all use a little more love in our corners.

Getty photo by Victor_Tongdee