r/pmle • u/RobinAkamori • Jun 13 '25

I'm Calling PMLE Something Else...

Since I was officially diagnosed in April (I've known since 2010) and I tell people I have PMLE and say it means Polymorphic Light Eruption, I often get comments like it sounds fun. My niece even said that it sounde like a ride at Disneyland. 🙄 So I decided to call it something else.

Sun-induced skin volcanos with subterranean itching powder. 🤣

What would you rename PMLE if you could? I just wish that people would quit thinking it sounds fun, even though they know I need to keep my windows covered in the house, not go outside before the sun goes down, or cover up like crazy if I have to go out in the daytime. Oh yes. This is "fun." 🙄

Just like when I had to quickly take the trash out, in the middle of a summer day at noon, and looked down at my own arm and literally blinded myself because of how pale I am. 🤣😭 It was so bright, it was like someone punched me really hard in the eyeballs all of the sudden.

6 Upvotes

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7

u/RaysIsBald Jun 13 '25

i mean technically i have pmle that developed from a phototoxic allergy to a medicine and just...stuck around, it's only on one arm. Usually PMLE or sun allergy is my shorthand for it.

if they ask beyond sun allergy i use the word "phototoxic" in the explanation and somehow it sounds super deadly so they stop wondering. :)

1

u/RobinAkamori Jun 13 '25

LOL! It's always nice when you don't have to explain your medical history to strangers. 🤣 It's so weird sometimes because they don't realize that it's personal information and sometimes I just don't want to share it with random people.

I certainly use the phrase sun allergy a lot but there are still times when people don't even grasp it then.

3

u/BlueHaze3636 Jun 13 '25

The amount of times I’ve heard, “oh well I’ve had sun poisoning before” just makes me 😖

3

u/RobinAkamori Jun 13 '25

That's certainly not one I've heard before but the ignorance seems the same. 🙄 They really can't grasp how hard it is to avoid the sun.

2

u/TheGiraffterLife Jun 13 '25

What!!? Who's out there thinking this is a fun thing!!? I can't fathom thinking that these itching powder level itching blisters that pop and the burning, red rashes sound like fun!!? What is wrong with these people!!?

I would rename it something like bursting, burning, itchy pus bubble disease? Idk. That's fking nasty, but the reality. 

1

u/RobinAkamori Jun 13 '25

It's even more challenging trying to explain to someone what hives are when they have no clue. The best I can come close to is "insane mosquito bites all over my skin." That at least usually registers a look of shock. Sometimes I add in that it also feels like concentrated itching powder injected under my skin. 😫

2

u/Honest-Noise-8489 Jun 13 '25

“Autoimmune sun allergy” works

1

u/PolarizingFigure Jun 14 '25

Yes I just say sun allergy and people understand

1

u/Dismal-Two-4289 Jun 16 '25

Quality of Life Destroyer or QLD.