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To the Photosensitive Woman Who 'Hates' Her Condition

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I saw you when I was in Bay City getting coffee with my mom and dad. We were on our way to a hiking trip in Michigan’s upper peninsula where I’d wear clothes that covered me from wrist to ankle and carry a parasol every second I was outside. I would finish the weekend with a chemical burn from my sunscreen, but also having seen some of the most beautiful and amazing scenery in the world (and having hike over 20 miles to do it!)

As we were enjoying the amazing coffee and tea, you walked in.

I was wearing my usual – a pair of compression hot-weather running pants and a stretching, lightweight hiking shirt. I had a cooling balaclava around my neck and a folded UV-safe umbrella in my hand. I was sitting carefully out of the sun from the window, showing my parents the awesome package design on the coffee we’d just purchased. I was absolutely delighted to be going on this adventure.

Unfortunately, you did not seem delighted with anything. You wore cargo pants, a full face mask, and an old sweatshirt with this written on the back: “Sun allergy: your ignorance hurts me”

And I understand.

Believe me, I understand how ignorance can hurt you as someone with a photosensitivity. I’ve went through almost everything — from a lowered GPA because the fluorescent light made me too sick to focus on tests, to nearly passing out at a fire drill because I couldn’t convince a safety officer that I needed to get inside. I wear a medical ID for this. I don’t do anything out in public on my own. I am always taking either a family member, trusted friend, my mentor, or my boyfriend as an extra line of defense against sometimes destructive ignorance.

But I am not defined by my sun allergy. And I am so sorry that at this moment, you are. Because while a photosensitivity is a disease, it’s also a superpower. I will have perfect skin as I age. I (with solar urticaria specifically) have a drastically lower risk of skin cancer because I simply can’t tolerate enough UV to get even a bit of a tan. Photosensitivity has helped me discover the wonder of doing things after dark, how much I absolutely love museums, how to reinvent my style and feel confident wearing things I never thought I could. In spite of the challenges, I’m not angry that I have a photosensitivity. And while I’m cognizant of the fact that the underrepresentation of sun allergies can be destructive to our community, while I fully believe in the social model of disability, I’m still sad you feel this way.

While I was too unsettled to speak to you – seeing something I’ve learned to accept and love about myself painted as something destructive – I know you’re an interesting and unique person. And I hope eventually you won’t be defined by something as small a part of you as the way your skin reacts to UV rays. Remember, you are more than your condition.

Originally published: July 17, 2018
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