Today we are featuring a guest post from one of our amazing friends Ally. Ally has epidermolytic ichthyosis (formerly known as epidermolytic hyperkeratosis). It is a rare genetic condition that causes the skin to be diffusely red with an increased risk of skin infections. You can read more about Ally’s story here.
So it happened…you notice someone looking at you or your child. Maybe it’s not even just a passing glance but a full on stare. Maybe it is accompanied with a confused look or worse…an inappropriate comment.
It has definitely happened to me and my first instinct is to say, “Hey! Wanna take a picture it’ll last longer!” Or I get my feelings hurt, hang my head down low and cover up my hands and arms. Neither of these approaches makes me feel better or improves the situation. To be honest, I have spent most of my life ignoring the comments and stares, but I have found that it is better to speak up. Speaking up helps that person learn something new and hopefully the next time he or she sees someone with something different about them, they will react a bit better. So here are my favorite ways to address these situations:
1. “I have a skin condition and don’t worry I’m not contagious and it doesn’t hurt me.” I used this line when I’m not feeling up to a conversation. 99.9% of the time when people see me they think I have a painful sunburn or I have something contagious. This way I answer what probably is their question, and I address the situation without having to explain much more.
2. “I’m a mutant like X-Men.” I usually say this if someone has asked me something along the lines of “What is that?” I believe humor belongs in almost everything and this line usually brings a smile to the person’s face. And once that happens. It brings their guard down and allows us to have a conversation about my skin condition.
3. “Did you know you are looking at a unicorn!” This is probably my favorite line because it totally catches people off guard. But the truth is they are seeing something out of the norm…and that’s really cool! And again, a lowered guard allows for more meaningful questions that gives way to education. Which I think is the key, being open enough to educate others by letting them ask question.
It may be difficult at first to address staring, questions, or insensitive comments head-on. But the more you do, the better you will get at it and amazingly the better you will feel about yourself. Because you have just become your own advocate and gained a superpower!!