Carly Findlay

Writer, speaker, appearance activist. Loving life!

  • About
  • Say Hello – my book
  • Hire me!
  • Support Me
  • Contact
  • What is Ichthyosis?
  • Ichthyosis + appearance diversity resources
  • Disclaimer
  • Shop
  • Guest post contribution guidelines

Ichthyosis Awareness Month – Carolyn’s story ~ “How I look is how I look and it doesn’t need an explanation.”.”

May 23, 2013 Carly Findlay 3 Comments

I can’t remember how Carolyn and I found each other – I think she wrote to me via email or Twitter after finding my blog. She’s in her 50s and lives in America. We have connected on social media and I love that she now doesn’t worry about what people think of her skin and appearance. Carolyn contributed to this story with a fabulous quote about how she doesn’t worry about offending anyone who asks her about her appearance. And she loves Darren Hayes. She’s definitely won me over! Here’s her story.

 


“I have ichthyosis or, to be more precise, I have Epidermolytic Ichthyosis, also known as EI. And I have a confession to make: It doesn’t bother me and I make no apologies. Approximately 1 in 100,000 people have this condition. Based on this smidgen of information I have been singled out in ways both good and bad as someone who is different with a capital D.

I’m not delusional enough to say I’m glad I have EI but I’m not horribly disappointed either. Not because it could be worse. Things can always be worse. At the end of the day, EI is my normal. In the same way being 5’3” with blue eyes and size 8 feet is my normal. EI is a chronic condition, much like diabetes, high blood pressure or seasonal allergies, nothing more nothing less.

There was a time when I did nothing but make apologies. It took an act of overt discrimination to get me to see how silly that was. It cost me a job but I gained so much more. Once I got through that horrible period I decided that I no longer needed to feel bad about how I look. I spent years walking around hoping no one would notice my skin. Once I gave that up and just accepted it for what it is, ‘came out’ if you will, the stress of trying to hide went away and my skin improved considerably. By improved I don’t mean I got that complexion the beauty magazines say we all covet. I mean I realized that how I look is how I look and how I look doesn’t need an explanation.

Once we understand that life is, indeed, unfair and accept the fact that EI requires an inordinate amount of attention and maintenance we can move on. There’s nothing wrong with asking to be cut a little slack for dealing with EI but we needn’t use EI as an excuse to avoid living. Traveling is hard but I love to travel. What to do? I envy the people whose skin doesn’t crack and bleed in the dry airplane air but I’m not going to stop traveling because mine does. It’s the price I pay for having EI.

The internet is a good and a bad thing. It’s good in that people with EI no longer need to wait for 21 years to meet someone else with the condition the way I did. It’s bad in that disability communities sometimes delve into the mentality that we’re more fragile than we are. Our skin is fragile. Our psyches needn’t be.”

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.

 

Share this:

  • Click to print (Opens in new window)
  • Click to email this to a friend (Opens in new window)
  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Google+ (Opens in new window)

Related

ichthyosis, Ichthyosis Awareness Month, skin, Uncategorized

Comments

  1. Jennifer says

    May 24, 2013 at 2:46 pm

    "Our skin is fragile. Our psyches needn’t be."

    Best thing I've read all day!

    Log in to Reply
  2. CarolynG says

    May 24, 2013 at 4:27 pm

    Thank you! EI is such a nuisance but it doesn't have to rule the day. 🙂

    Log in to Reply
  3. CarolynG says

    May 24, 2013 at 5:11 pm

    Thank you! EI can be such a pain, but it doesn't have to rule the day. 🙂

    Log in to Reply

Leave a Reply Cancel reply

You must be logged in to post a comment.

Socials

  • View tune.into.radio.carly’s profile on Facebook
  • View @carlyfindlay’s profile on Twitter
  • View carlyfindlay’s profile on Instagram
  • View sqoggle’s profile on YouTube

Sign up for some love in your inbox

Archives

Popular Posts

  • What's with the image descriptions on my social media posts?
  • The death of Offspring's Dr Patrick Reid. The TV death that stopped a nation.
  • The Greatest Showman - upliftspirational exploitation and the able gaze
  • On being called an inspiration
  • What kind of person laughs at a stranger's face?

Listen to my podcast

Tune in

Enter your email address to receive new posts by email.

Copyright

The material on Tune into Radio Carly is copyright. The writing in this blog is by Carly Findlay unless otherwise stated. Most photos in this blog are by Carly Findlay unless otherwise stated. Please do not reproduce without permission from Carly Findlay. This blog represents my personal opinions and experiences. It does not reflect those of my employers'. The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about. Where stared, I use affiliate links on this blog. By clicking them, I receive a small percentage of the purchase.

Copyright © 2019 · Daily Dish Pro Theme on Genesis Framework · WordPress · Log in

loading Cancel
Post was not sent - check your email addresses!
Email check failed, please try again
Sorry, your blog cannot share posts by email.