Ichthyosis Awareness Month - Lea's story: "A complete stranger on the street, though, is sure that he/she has the answer I’ve been looking for all my life!"

Today Lea addresses some of the assumptions made about people who look different. There's a constant struggle among us to educate the curious, to ignore the stupid and to do it all politely. There's an expectation that we will be polite, and if we are anything but, we are bitter, rude or ungrateful for advice. I wish that people could accept that these comments, questions and situations Lea mentions here are tiring. And bloody rude. Lea's got sass, and I think her examples of assertiveness are good for others to use when encountering these sorts of interactions too.

Meet Lea. 

"I live in Colorado in the US, I am 35, I have Lamellar Ichthyosis/congenital ichthyosiform erythroderma (LI/CIE), I have a husband and two kids. By May, I will have a Master's degree in clinical mental health counseling. And if you couldn't tell by some of the pictures, I love my yellow Harley!

When someone has a medical condition, everyone else instantly becomes a "doctor" and has an opinion about how the condition should be managed or what causes it. Apparently, the appearance of ichthyosis is so mind-boggling to some people that they come to their own conclusions as to how or why my skin looks the way it does, and all common-sense and manners tend to go out the window.

I get the “sunburned/got some sun” comment the most. I have also been told I look like this because I MUST have been in a horrible accident as a young child and was severely burned. Then there were the people who insisted that my mother did drugs or drank when she was pregnant or that I used drugs of some sort. Then there are others who felt that perhaps I or someone in my family must have really pissed God off. The best one, though, was when someone told me my skin was like this because of "cellular memory." What does that even mean? 

If a person feels generous after the quick etiology assumption, I get advice on how to care for my skin. Apparently, after living with ichthyosis for 35 years and seeing numerous dermatologists, neither I nor my doctors know what works best for me. A complete stranger on the street, though, is sure that he/she has the answer I’ve been looking for all my life!

"I know someone who had what you have and they used such-and-such lotion (or took some sort of pill) and it cured them!" Well, my skin doesn't have a cure. Usually, the such-and-such lotion they name is a weak, light lotion that would leave me drier and flakier than when I first started!

"You just need to wash more often." Actually I bathe quite frequently. Sometimes a couple times a day!

"Drink more water." Because the keratin layer of my skin is damaged, I realize that my skin loses moisture very easily. I carry a water bottle with me at all times and try to drink at least my body weight in ounces every day.

"Eat healthier."

"Have you tried acupuncture?"

"You must be allergic to something. Take some Benadryl."

Of course, the thing about unsolicited advice is that if you don't react with extreme gratitude, the solicitor becomes offended. Usually I reply with a polite "Thanks, I appreciate your concern." Then file it in my mental trash bin.

But there are times that the comments are so atrocious that I just can't let it go. For those comments, I employ the I-can’t-believe-you-just-said-that stare. Or if I’m feeling particularly sassy, I like to reply with comments of my own:

"I appreciate your need to point out that my appearance is noticeably different than everyone else's." or "Do you always give out unsolicited advice about people's medical conditions or am I just especially lucky?"

But of course, that would be considered rude."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

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