Last week, an acquaintance asked me about my chronic illness. We had recently started following each other on Instagram, and a few days after she started liking my posts, we bumped into each other in person.
(Side note – You do follow me on Instagram. Right? I hope you do!
@wendykennar
You follow me, and then I will follow you back. Let’s support each other!)
Back to last week.
J told me she had seen some of my posts.
“You talk about pain, but what is it? What do you have?” she asked.
“It’s an autoimmune disease,” I began.
“Which one?” she asked.
So I told J about my UCTD (Undifferentiated Connective Tissue Disease). I told her some days, and some parts of days, are much worse than others. I told her it was difficult to diagnose.
“And that makes it hard to treat,” she said.
I looked at her. “Exactly,” I said.
“My sister has chronic fatigue syndrome,” J told me.
“Oh my goodness, that’s awful,” I said. And it is. (If you don’t know about CFS, you can click here to read an article from the Mayo Clinic.)
“When my sister is in a flare, she says her bones hurt,” J said.
“But I would have never known you had anything. I couldn’t tell,” she said.
“That’s the way it works, right? I’m sure it’s the same for your sister,” I said. “I’m sure most of the time no one would suspect she lives with a condition that sometimes makes it impossible to leave her bed.”
J seemed surprised when I told her I own a wheelchair and use it from time to time. She seemed shocked when I told her I first became ill when my now-almost-eighteen-year-old son was two years old. But how would she have known? I don’t just go up to people and start talking about my autoimmune disease. And as those of you living with invisible illnesses know too well, spoonies have a lot of practice looking “fine,” as we’re out in the world, doing our best to go about our days and live our lives the best we can.
Now here’s the part I’m most proud of, I didn’t end the conversation there. Friends, I then did something I don’t ordinarily do. I shared something else, something super important to me.
“I’m actually writing a book about living with an invisible illness,” I told J.
J nodded. “To explain about your experience?”
“Yes, and more than that, to help others see that you can’t always tell what someone is going through simply by looking at them. Being sick has taught me that everyone is dealing with something. Everyone lives with some sort of pain.”
It might not seem like a lot, but for me, that was a big step. I’m not great at self-promotion, of talking about myself, my writing, and my writing goals. But I’m trying to improve on that and get more comfortable talking and sharing about my writing. After all, my writing is a huge part of who I am and what I do. And the truth is I don’t just want to write. And I don’t just want to be published. I also, most definitely, want to be read.
How about you, friends? Do you find it difficult to talk with others about your creative work? How do you go about sharing your writing (or whatever it is that you create)?
WendyKennar.com 