This has especially been weighing on my heart a lot recently and it’s a bit difficult for me to explain. I find myself feeling incredibly wounded and uncomfortable when strangers pray for me to be “healed” of my skin condition. I have never requested for anyone to pray for me to “be normal” and in all honesty it reeks of ignorance and assumptions when people do this. Despite believing in miracles, I have come to terms with not needing or desperately wanting one for myself. I believe that we are all “Fearfully and Wonderfully Made” (Psalm 139:14, one of my favorite Bible verses) by an amazing creator. Of course there are incredibly difficult days, but I firmly believe that God did not make a mistake in making me or anyone else. While I don’t think that people necessarily have bad intentions when they pray for my skin to get better, it makes me feel beyond hurt. It makes me feel like I’m not good enough and it makes me feel like I’m not accepted the way I am. I have seen God work so much through having this. I wouldn’t be nearly as compassionate or kind had I not known what it is like to have this condition. God has changed my heart and transformed me and that is enough for me. I believe that without suffering, hurt, and disappointment we wouldn’t have the capacity for true compassion. (If you would like to read more about this, my blog post, The Crossroad, expands on this).
I find myself cringing internally when someone reaches out their hand to shake my hand or high five me or when an activity calls for hand holding. I am well aware that my hands are dry so I’m never one to initiate touch in general. In all honesty, my first impression of people, if we shake hands, is based on if they try to discreetly wipe their hands off on their pants after touching mine.
I am extremely observant and always have been. Often I try to pretend that I don’t notice when a stranger stares at me or moves away from me, especially when I am with friends or acquaintances.
I am still astonished when people just bluntly ask me about what happened to my face/skin without even acknowledging me as a person first. I honestly don’t mind talking about my skin condition and letting people ask questions. Drunk people are the worst when it comes to asking really invasive questions. I hate walking past anywhere where people have been drinking for this reason.
I hate feeling like I have to constantly prove people wrong. As someone who looks different, there are often times lower expectations of me. I have had people talk super slowly to me and assume I’m unintelligent. Last semester, a teacher’s assistant that I had never even spoken to before had the audacity to ask me if I was sure the graded exam that I picked up after my name was called was mine and not someone else’s because I had gotten a perfect score.
It took me until probably the 5th grade to occasionally start wearing short sleeves and shorts. I am still not super comfortable wearing short sleeves when I know I’m going to be in a crowded space.
“1 like = get well soon” type posts make me so unbelievably angry. These are real people and they don’t deserve to be subjugated to such ignorance. I have seen these types of posts go viral with pictures of people with my specific skin disorder and other skin conditions. If you’d like to read more about this topic or why this is offensive you should check out this post: http://www.courtneywestlake.com/ignorance/
No, you likely do not have a magical cream that will work wonders on my skin. No, I do not have a sunburn. No, my skin condition is not contagious.
Pity from other people disgusts me. I have chosen to make my struggle my strength.
I still remember almost every rude comment or action that I've experienced. Words are powerful and they can impact people more than you know.
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I honestly don’t want to be your inspiration and I don’t think I deserve to be. I don’t believe that I have done anything commendable yet and I’m simply just living my life, just like you are living your life.
Well said!
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