I was going to write a rant. But I’m tired. Plus it’s better to be nice in situations like these. And I can’t take on any more of the Internet today.
This morning I discovered, through my blog statistics, that someone had posted a picture of me (displayed) on Reddit, in the WTF thread. You know, My photo made them say “What the fuck?”.
And so I clicked on the link, and read the comments. Oh god the comments. The comments. It took me back to the time I was featured on a voyeuristic forum.
“What does your vagina look like?”
“WTF is that? Looks like something that was partially digested by my dog.”
“Lobster.”
“She looks like a glazed donut.”
“I dated a girl with a mild form of Ichthyosis once.Thankfully she was Filipino so her skin was naturally brown, otherwise she’d be as bright red as her. I thought her skin was cool.. it certainly wasn’t unpleasant, but had a nice texture. Plus her boobs felt like underinflated basketballs… Very fun to squeeze :)”
“Seeing people like this smile makes me uncomfortable. It looks like a lie; they are only smiling in an attempt to fool themselves that their lives aren’t horrible. You can see it in her eyes. The same rehearsed dead-eye mouth-smile in all her pictures. Gives me the willies.” (That photo was actually taken on one of the happiest nights of my life, when I met the Rush cast.)
And there were countless diagnoses (so many people educated by Dr Google) and assumptions of sunburn. They annoyed me a lot.
Then I looked further and there was SO much support. People had linked to my blog and become educated. They’d called out the nasties. There were SO MANY positive comments about my appearance. One person said I look like Geena Davis:
“There, but for the Grace of God, go I. Parents, teach your children not to laugh at people that aren’t what society deems as “perfect”. That’s my sermon for the day, keep your comments to yourself if you don’t agree with me. I don’t need any help, thanks tho. Except for her condition she has a smile that makes her look like Geena Davis.”
One guy said he wishes he hadn’t missed his chance to ask me out on a date.
And this guy, he was a standout:
“You, madam, are the strongest motherfucker I have ever HEARD of, let alone met. If you are ever in boston, i would be honored to buy you a beer.”
And then I posted this response.
I knew the day would come that someone would create a Reddit thread about me, using my photo, having a laugh at my appearance.
For years, that fear was why I didn’t share photos of me online. But now, after gaining confidence and support through years of blogging, I couldn’t care whether they call me a lobster or silly putty.
The love I have around me and success I have had through telling my own story to break down stigma like these Reddit threads is stronger than any of those words.
Yes I have Ichthyosis. Yes that picture is me. Don’t fear it and don’t criticise it. I am proud of the way I look, what I have achieved and for telling my story.
FYI: I have two forms of Ichthyosis – a mix of Netherton’s syndrome and erythroderma. My skin is shiny because I use paraffin. My body is less red than my face as it’s not exposed to the elements, but it is generally more painful. Ichthyosis is survivable – I have lived a very full life.
Thanks for linking to my blog too, so people are informed of the real me rather than through the speculation on this thread. For those who missed it, you can read more about me at http://carlyfindlay.blogspot.com
The original poster gave me an apology. A bit backhanded, but I thanked them all the same.
“Im reading all this and I apologize!
I was looking for “champagne fridge” on google images. When i saw your picture, I thought “WTF!” and further: “allergic reaction“, also your hair looks a bit on fire so I put it here.
Hopefully you see it as a good promotion for your blog and chapeau to you for being awesome!”
I felt a bit sick. So many people dissecting my photo on the Internet. But then I remembered.