Stigma Should Be the Only Disease that Brings Shame to Anyone Spreading It

A person who shames you because you are sick deserves neither your respect nor a place in your life. That’s what I said to a young woman who I met via a Crohn’s Disease group. She messaged me to ask for advice on how to deal with friends who “hurt [her] feelings, when they said they couldn’t understand “how [she] talks to other people about Crohn’s without dying of shame.”

Crohn’s Disease isn’t an illness that can be kept secret (or camouflaged) from people one spends a lot of time with, especially during flare-ups. I’m not just talking about symptoms like stomach pain, or having to poop too many times, or going days without being able to poop, or needing to poop but wishing you didn’t have to because it hurts so damn much. Yes, my Wicked Luvs, I know I just typed the word “poop” 3 times in the same paragraph. I did it because poop (make that 5) is one of the things many of us must get really comfortable with in order to live with Crohn’s.

I’m not suggesting that we must tell everyone everything about our toilet habits. However, we need people in our lives to whom we can safely say, “I can’t leave the house today because my butt’s on fire. But I’m not in too much pain, so we can hang out if you come over.”

Living with an illness should never be a cause for embarrassment. The stigma certain individuals and society as a whole have attached to some illnesses and disabilities (or to anything that implies a person doesn’t fit the box they’ve labelled normal) is the real disgrace. If you ask me, stigma should be the only disease that brings shame to those spreading it.

So I say to that young lady, and to anyone living with an illness, surround yourself with people who have hearts and brains big enough to understand that your disease isn’t you, but being chronically ill is a rather important part of who you are. They need to know that they will never be able to be a true friend to you, if they can’t accept (and try to understand) all of the parts that have crafted you—including the not so healthy bits… perhaps, especially the not so healthy bits.

What say you, my Luvs?

“If You Love”

If you love
me, others, yourself…

you’ll know why I grow
my sun in a pot. You’ll see
why the heart of my garden
is a rainbow. You’ll feel
wings that sprout
out of rooted life that will
always be able to fly.

If you love
me, others, yourself…

If You Love, by Magaly Guerreroa paged from Johanna Basford’s
Secret Garden: an Inky Treasure Hunt and Coloring Book
colored and poetized by moi

Of Caribbean Gothic and Observing One’s Own Life from the Outside

“People build something that works. Then circumstances change, and they have to tinker with it to make it continue to work, and they are so busy tinkering that they cannot see that a much better idea would be to build a whole new system to deal with the new circumstances. But to an outsider, the idea is obvious.” ~ Monstrous Regiment, by Terry Pratchett

I’m stable enough to start writing full time again. This doesn’t mean that I’m healed or cured or anything that fun—my illnesses are chronic, so we just have to learn to live with each other. By stable, I mean that I understand my ailments enough to know how much I can push and for how long. That’s as good as it gets (for now). There are days when my feet and hands hurt so much that I can barely concentrate. The same goes for the left side of my back, and my stomach.

But the pain no longer takes me by surprise. I’ve learned to identify the signs, to ready myself for the nasty kicks. When the pain is bad, but not quite killing me yet, I watch television in bed with my Piano Man, do house cleaning, blog, play with my books, complain, and do other fun things that don’t take tons of brain power. I use my good days for editing, rewriting, and for doing other bits that require concentration.

During one of my really good days—while battling with two storylines that didn’t seem to like each other much—I realized something: at the moment, my immune system and I don’t have enough consecutive good days to deal with the stress involved in independent publishing. So I started revising the novel I wanted to self-publish next year, in order to make it as agent worthy as I possibly could. The more I worked on it, the more I knew that I didn’t want to change anything about it. I got frustrated. After lots of arguing with myself, I set the novel aside and reread some Pratchett. I laughed really hard when I got to the quote at the beginning of this post. I took the words as a sign from my Knight Writer.

So yesterday, I asked Facebook friends to choose between Caribbean Gothic, Mythical Circus and Mythical Realities. I didn’t say why—but since I have super brilliant friends, they deduced that I was talking about stories to be written. The winning choice (by a rather healthy margin) was Caribbean Gothic. I had three ideas for new novels in my head. But like any word-mother, who loves all her children equally, I couldn’t pick one. Thank you for the help, my Wicked Luvs.

I shall start putting pen to paper (all right, fingertips to keyboard) on the morning of the 28th. I haven’t met all the characters yet. But I know the story’s beginning, two of the main conflicts, and most of the ending. And yes, I know the setting—a Dominican Republic (real and imagined) bursting with wonders, beauties and horrors.

There will probably certainly be mangoes, wild witchery, fighting, loving, and furious dancing.

Hard Times Require Furious Dancingdetail from the cover of Hard Times Require Furious Dancing, by Alice Walker