- My disorder has effected my outlook on life in such a great way. I know life is short and I try not to take it for granted.
- It's made me be able to stand up for myself. Oddly enough, it's made me have confidence. With such a "different" appearance you have two choices in life. Sink or swim. Let people who talk, stare, whisper bring you down OR you stand up for yourself. Try to educate them.
- It's taught me it's okay to laugh at life and yourself. Being red has given me many jokes! Lol.
- I feel blessed that God knew I was strong and determined enough to live with this disorder. He knew I had to be strong, determined, outspoken and stubborn enough not to let things bring me down.
- You realize whose your friend when push comes to shove, some will bail on you when people are giving you a hard time, some will stand by you and defend you as you're defending yourself. I'm so thankful for my great friends!
- I never have chapped lips! My aquaphor that I have to keep on takes care of that problem!
- I bleed easy but I heal super duper quick.
- You don't have to worry about tanning, there is no need for it!
- You can incorporate your skin into your Halloween costume... I was piglet this year with my family. ;)
- I don't have to worry about shaving or haircuts and when I wash my hair I can leave it in the sink then let it air dry on the wig head.
- It's an easy way to get out of school "sick", let me tell ya... I abused this power tooooo much in school. My skin hurts? Stay home!
When I decided to write this post, I asked a few other people to add in why they were thankful to have Ichthyosis. Here are some of their reasons:
"I am thankful for having ichthyosis as it's given me perspective, a reason to write and speak about the importance of celebrating appearance diversity and also wrinkle free skin. I am almost 33 but still look 23!
Writing and speaking about my condition has connected me with an amazing community - and I feel so lucky to have these friends in my life. My friendships have gone from online to real life - and it was a delight to meet so many people with ichthyosis on my recent trip overseas."- Carly Findlay; Nethertons Syndrome. Age 33.
"Life is brief and moments of happiness are briefer still. Some of the best moments of my life have happened because of my Ichthyosis! Because I was born into my circumstance, God has blessed me with wonderfully supportive family and friends for when I can't face it alone. But why would I want to go it alone! Because of my Ichthyosis, I have been welcomed into such a loving community of folks who understand exactly what I'm going through on levels that my own family doesn't always understand.
Life will always have its ups and downs, but I choose to see my Ichthyosis as a giant up! In my 20 years, I have learned a lot about people. One of those big lessons is that we always seem to curse our circumstances. We get too caught up in "woe is me" or "look at me, I'm miserable." I'm not saying that it is always easy. There are hardships! But there is always a light in the darkness. We only have to look for it!"- Hunter Steinitz; Harlequin Ichthyosis. Age 20.
"I got given the slightly unlucky pick of Harlequin Ichthyosis...still. you can't have have everything can you?! You only get one shot at life. So you might as well give it a go. I am thankful for having Ichthyosis because it's afforded me a great life. A life that would be very different had I not been born with Ichthyosis. I'm grateful for the myriad of people and connections I've met and the opportunities that have come my way. People in Asia talk about 'Guanxi', influence and networking, and that is something I am grateful for in a society that is otherwise ignorant of those with difference. The family is also something I am grateful for as well because without family, I don't know where I would be. I write a blog called The IchthyRef. I write about my life and what it's like to live a life in Hong Kong with Ichthyosis. The good, the bad, the downright crazy." Mui Thomas; Harlequin Ichthyosis. Age 21.
Mui's instagram is muixthomas