My name is Alyssa Graybeal, and I live in Astoria, Oregon. I grew up in the Portland, Oregon area, then lived all across Canada for twelve years before moving to the Oregon coast in 2012.
I’m lucky in that I got my first diagnosis of Ehlers-Danlos syndrome (EDS) when I was ten years old, sort of by accident when an emergency room doctor recognized my hypermobility and fragile skin. I was super “clumsy” and had had hundreds of stitches on my shins by that age.
Unfortunately, EDS was even less well-known in 1992 than it is now, so medical support was minimal. I basically learned to push through exhaustion and chronic pain and fainting spells like it was normal. So I ignored my EDS until around age 30, when my symptoms increased significantly. Then it was a slow, years-long process of relearning how to listen to my body and tip-toeing back into the medical system.
Aside from a fibre art diploma from the Haliburton School of Art and Design in Ontario, Canada (’08), I don’t have any formal art training. I studied linguistics and cultural studies as an undergrad (McGill University ’04), and later got a Master of Library and Information Science degree (Dalhousie University ’11) and became a librarian. Not long after getting my masters, I had to shift gears to freelancing because my symptoms prevented me from working a full-time job out of the house. Now I work remotely as editor for the Collaborative Summer Library Program, a consortium of over 7,000 public libraries across the U.S. I still do freelance copyediting, and I write profiles for a local newspaper.
I do take a lot of workshops, though. If I need creative input, I take an in-person weekend workshop or an online class that doesn’t even require me to leave the house. I highly recommend it! I’ve connected with many artists and writers this way. It’s like school but more fun, with less stress, less competition, and less debt.
I’m currently rewriting a book of humorous essays about living with cEDS/POTS/MCAS, which I’ve been working on for almost three years. I didn’t actually start drawing until I had finished the first draft of this book in late 2017. Before that, I’d never considered myself as someone who “could draw.”
But I became interested in the efficiency of comics at conveying information about otherwise invisible realities. People’s eyes glaze over if I start talking about collagen fibers, but it’s really easy to understand a cartoon of a disjointed person loosely sewn together with tangled thread. Now I’m illustrating each essay and working with an editor to prepare the book for submission to publishers.
I have the obvious physical limitations, like when I’m so exhausted I have to stay in my chair all day with my feet up, or when I have brain fog, or when my hand hurts too much to draw.
But I’ve been thinking a lot lately about how creativity thrives on limitations. Like, if I were required to draw a landscape using only the color blue or using only triangles, I’d draw something I wouldn’t have been able to come up with otherwise. I think that’s why so many artists love prompts, because they place limits on what or how to create.
I tell myself that any limitation, even a physical one from chronic illness, can increase creative possibilities.
Since one of my physical limitations is that I might run out of energy by noon, I have to be really disciplined about always writing or drawing first thing in the morning. If I had more energy, I might tell myself I had all the time in the world and then just never get around to it. So, in that sense, I think I’m more dedicated to creating art every day because of my symptoms; having to prioritize my creative projects has focused my artistic practice, not interfered with it.
I think people with chronic illness need a lot of creativity to figure out how to live full lives, so it makes sense to me that we’re often skilled at transferring that creative energy to the page or to the canvas.
I cringe when I look back at how harshly I treated myself and my illness when I was younger. I internalized so much dismissiveness. But it is really empowering — and sometimes infuriating — to insist, whether to yourself or to others, that your symptoms are real, have always been real, and that you deserve care and treatment. It sounds so simple, but it’s a really hard thing to do when we’re culturally programmed not to be “too sensitive.”
I hope to inspire others to feel less alone in what might feel like the never-ending work of advocating for themselves. I want to remind women that the cultural dismissiveness of chronic health problems that predominantly affect women is deeply systemic; having a chronic illness is not a personal failing.
I also hope to add a dose of humor and lightheartedness to some of the day-to-day absurdities. I doubt I’d be able to function without the ability to step back and laugh at it all.
Connect
I’d love to hear from you! Click here for a free EDS-inspired e–zine, Magic Zebra Makes Tea. I’m also giving away a PDF of the 80-page comic that I drew last fall if you sign up for my occasional newsletter.
Website: www.alyssagraybeal.com
Some EDS-themed articles on The Mighty: @alyssa-graybeal
Miss Diagnoses 
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