On Saturday, a person tried to humiliate me by sending a brief message through my personal email account. The message was simple, characteristic of the small mind that sent it: a picture of me in a less than favorable light, with language referring to my face, “not good, bad, bad.”
I suffer from a rare skin condition called Dowling Degos. Except for occasionally checking for any signs of skin cancer, I do not worry about my skin problem as a medical condition. It is ugly, keeps getting uglier with age, and there is nothing I can do to change it. I don’t even have to take medicine for it.
Ever since I was a teenager I have struggled to accept the many blemishes on my skin as part of my identity. The condition has stirred my insecurities. As a young woman, I daydreamed of having porcelain complexion, unblemished and smooth. I started picking obsessively on my face at nights when I was alone in the bathroom, a bad habit that remains to this day, or when I felt really angry about something. When it became obvious that it would not go away, I prayed for a miracle until I stopped believing. (But that’s another issue.)
Sometimes, I call myself “fea, eres fea” unable to accept this thing on my face and other parts of my body. Some other times I’m grateful because as ugly as it makes me feel, it is manageable and won’t kill me.
This is Dowling Degos Disease does to skin, in simple terms: my pores are too wide and are interconnected like in a net. They look like blackheads or zits, and are surrounded by dark spots. Cysts are common. Additionally, I have a scar on the left side of my chin, from a failed dermabrasion performed on my face when I was 28 years old.The new skin came out several tones lighter than my natural tan. Direct exposure to sunlight produces dark spots on my face not because of Dowling Degos, but as a consequence of the failed dermabrasion. In addition, some of the medication I take for my mental condition make me even more sensitive to sunlight increasing the hyper pigmentation. So I wear wide rim hats (Coolibar) and sunscreen (Thinksport SPF 50) by the pound. Other than that, I consider myself lucky. Dowling Degos doesn’t hurt me or anyone coming near me.
Because women are so busy earning money, raising children, educating themselves, keeping healthy, and fighting patriarchy, I find it interesting that another woman found the time to search for a picture of me on the web, copy it to her desktop, and paste it on an email just to elicit a negative reaction from me. It had the opposite result. The bully’s message prompted me to write about Dowling Degos Disease.
Thanks for the idea of educating my audience about what it is like to live with a genetic and rare skin condition and how it has affected my life.
Cyberbullying does hurt people, though. That’s a disease of the soul.
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