When We Realized My Body Doesn't Love the Sun

It took years and years for me to get a diagnosis. And when I finally did, I had more questions than answers.

I first started displaying symptoms around puberty. I hated going outside. It made me feel weird and wrong and sick. I would still go play with my friends in the snow, but not the pool. I’d help put up Christmas lights, but not plant flowers. I didn’t understand. My parents wrote it off to preteen hormonal shifts. I was stumped. Frustrated. Uncertain what was going on.

I noticed the rash a while later, but it’d go away so fast I thought it couldn’t possibly mean anything, couldn’t possibly be more than just prickly heat. And then on a family vacation my sister saw it and showed my parents. And then I suddenly realized that it wasn’t normal.

But that was just the beginning.

We knew my body didn’t love the sun.

But we didn’t know what to do about it.

Or really what that meant at all.

I finally got a diagnosis from my doctor – solar urticaria/polymorphic light eruption/chronic sun poisoning – at my pre-college physical. I didn’t get real treatment recommendations for years after.

I fought with sunscreen that stained my clothes and left chemical burns on my skin.

I felt sick nearly constantly from fluorescent light, sunshine through car windows, even light filtered through a non-UV protected parasol.

It took more than a decade, from age 10 to age 21, before I landed on a treatment and prevention plan that worked for me.

Because sun conditions aren’t easy to diagnose. And treating them can feel like a losing battle – you’re fighting symptoms, not causes, and symptoms only by prevention rather than treatment once they occur.

And that made it hard.

But I’m a fighter. Always have been. Always will be.

And me and my parasol are gonna be just fine.

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