Miles O. - Pittsburgh, PA - 2023
Today is an example of why it can be difficult to be different. I took Miles with me to the mall and he wanted to play at the playground area. Kids are running around having a blast and Miles couldn’t wait to join.
However when Miles began to play the staring and the whispering started from everywhere. There was one little girl that would not leave him alone. She told him he looked scary and said he looked like something was wrong with him. She proceeded to follow him around the play area and brought others over and even asked if she could touch his skin.
I know I did everything right. I put my mother, teacher and advocate voice on. That I am used to but my heart broke because this was the first time I actively saw Miles was bothered. Bothered by the staring, the questions, and the kids who refused to leave him alone.
I didn’t let him know what I was feeling. I let him finish playing and told him it was time to go and then we had a talk. I told him that it can feel overwhelming when others stare and ask questions. If you want to answer you can but if you don’t want to you owe them nothing more than this is my special skin and I was born this way. The most important thing is that you love yourself.
I figured if they are going to stare let’s give them something to stare at so we took turns yelling louder “I LOVE MYSELF!” down the mall corridor until we got outside.
#mylovegoesformiles #geneticallyamazing #harlequinichthyosis #advocatelikeamother
Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.