Advocacy isn't as hard as you think: here's how I make a difference in people's lives by sharing my story with politicians.
Published On: Apr 3, 2020
Last Updated On: Sep 29, 2020
I’m not about to downplay what’s happening in the world right now. It’s no secret that these circumstances are not ideal — but living with a visible skin condition, aren’t we used to social distancing already?
Being forced to stay home during these times is bringing me way back to when I refused to leave my house because I had a painful rash covering my whole face. Girl, I didn’t want to go out in public and interact with people when I looked like that. It’s kind of ironic people assumed I was contagious back then too.
Speaking of which, that’s kind of what led me to start an Instagram for my eczema. People who aren’t familiar with eczema are “afraid” of it simply because they don’t know what it is — they never see it. But can you blame them? We’re always trying so desperately to hide it, and we do a good job: long sleeves in the summer, scarves to cover up the neck and chest eczema, and makeup for the little face flares.
I used to be proud of how good I was at covering up my eczema, but then I started being like “wait, why am I doing this anyways?” I was hiding it because I thought it would make others more comfortable, but then I was like “wait, but I also want to be comfortable!”
In May 2016, I made my first post on my @eczemalove account. Hiding my eczema was taking a toll on me, and I realized it wasn’t really helping anybody. Like I said before, people are scared of eczema because they don’t know what it is because they never see it. So, I decided to show them!
I want eczema to get as much exposure as possible. There are so many of us that have a visible skin condition whether it be eczema, psoriasis, cystic acne, etc. It is so beyond normal, and I don’t know why it took me so long to realize that.
The one goal I had with my Instagram account was simply to make eczema more visible. So, I started posting selfies with a face full of eczema and frequently documenting my flares. I really wanted to show what it’s like to live with eczema. This was for people who don’t have it but also, especially, for the people that do.
Messages from others have nearly brought me to tears when they tell me they saw something I posted, and they decided to go out wearing shorts or a tank top. It boosted their confidence because that’s something they never would have even imagined doing before. It’s hard to get to the point where you feel comfortable enough letting your eczema be out and visible for the world to see. It’s definitely a journey, and it definitely doesn’t happen overnight.
I wish I would have had someone to look up to when I was younger and struggling to feel comfortable in my skin. Now, I’m trying my best to be that person for younger kids and teens. There is absolutely no reason anyone should feel like they have to hide themselves because of an eczema flare. And now this leads me to my next mission: visibility and normalization.
My journey to accepting my skin started when I began posting pictures of my eczema publicly. The acceptance from others was overwhelming, and it really boosted my confidence. I have the online eczema community to thank for that. Posting my flares online was the reason it became so easy for me to unhide my eczema in public.
If we all make an attempt to show our eczema, whether it be online or out in public, the exposure is good. It’s beneficial. It’s educational. What are you doing right now? You’re probably quarantined/social distancing at home reading this article. How about you take a selfie? Get in front of a window with some natural lighting and show off that flare. Is it on your arm? Get that arm in there!
I know your hands are probably flaring up from all the handwashing right now, get that hand in the picture too. It’s time to pretend we’re all fashion models, and the accessory is our itchy red patches. I’ve decided that’s in style right now.
TL;DR (too long; didn’t read) – Take a picture of yourself and share it with the world. Add the hashtag #eczemaselfiechallenge and tag @nationaleczema and @eczemalove. I’ll post your pictures on my Instagram for the world to see.