Wednesday, December 6, 2017

Unpeeling and More Becoming: Life with Ichthyosis Vulgaris

You're here because the lines on your hands have lead your here. You could have spent the time watching Youtube videos, reading an ebook, cooking, shaving, whatever. But here you are, wondering whether what you went through all these years do mean 'something' or you were wondering whether someone else in the world has the same skin or shitty disorder as you do. As it turns out,  you're not alone, though you've long believed this is some orphan disease no one gave a shit about.

Some have survived the taunting, the bullying, the embarrassment, the shame they were made to feel for being born this way. It's not a big deal really, and shouldn't have been a big deal really, compared to other possible genetic problems one might face. Our skin though not normal, our limbs and minds remain functional like everyone else's.

Sure your skin sloughs off, molts, cracks, peels, goes red in places, breaks in patches, lines everywhere. You get a flare up now and then, sometimes painful and unbearable, sometimes not. At least you can breathe, walk-and-talk without assistance, and you have that basic gift of a high-functioning mind (I assume you do because you can read this). Having less of a genetic problem than another person should not make us feel any better. But often we are consoled or empathized this way. I grew up being consoled or empathized this way whenever someone who cared enough found me alone and crying (And it never happened to be my parents- ever!) Caring folks often presented someone else with a much more terrible affliction as a model for 'Your shit could be worse, so suck it up!'. As if, this should instantly lift my spirits and prod me to find some grace in it. I find no comfort or see no silver lining in someone else's suffering.

We carry our own personal hell, magnify it in our heads. Yes, sometimes hiding it is easier. That secret shame of skins.

There were comments and emails from people that this "should not rule our lives".. maybe for a time it did in my life especially when I was younger , as a child, and most specially in my teens. Well, not everyone has that spunky persona with a sharp comeback that can fight off people in a snap. Some of us, the reserved, quiet types are further pushed down to total introversion by said skin disorder. Honestly, my skin stop being an issue once my cracked and lined hands started catching up with my age. I am now known as the adult who possibly worked in the sulfur mines and had to toil by breaking rocks and such with my palms. Only such immense hard labor could have resulted in such worn out hands they say. That or I possibly worked as a laundry woman whose hands are constantly soaked in detergent and industrial bleach. LOL. No, I work a boring deskjob, the hardest thing I have to do with my Icthyosis hands is fix a jammed stapler. I only found grace in this affliction once I gotten this old, when I had my kids.

To the younger ones with Icthy with absolutely no support or love from anyone, time is on your side. You will grow old and grow out of the life you currently have. Time and circumstance will push you forward, you have to brace for it and make good.

Remember, self-love and self-care. No one can do that for you in a way that they really understand you. There is no harm or shame in loving yourself. Self-neglect is the worst thing you can do to yourself. Not just neglect of the body, but of the mind. If you embrace and love yourself more, and not give a shit for once about other toxic people, your life will start to feel a bit better. You will have that clarity to pursue your dreams and find your purpose. How blessed are those with good, loving people around them, treasure them, not everyone has that kind of support in life.

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