Writing About Lipedema

My body may limit me at times, but my mind travels at light speed.

As I got pregnant with my first child, some annoying little pains and complaints I already had, became much worse. Two years later it got a name: lipedema.

Lipedema – A poorly understood yet common condition that makes you swell
with fat and fluid, regardless of caloric intake. It specifically affects legs,
hips, buttocks and sometimes arms. It changes your appearance, is painful
and hinders mobility. There is no cure at this point.

My health had taken a hit and I couldn’t see myself functioning in the rat race anymore. Working from home was convenient. I first did administrative stuff, but soon I became Typo-Tatjana. Correcting became editing and next writing and translating. Before I knew it I was a professional content writer. Yet, I always viewed it as something temporary. Like it was something for now, until I would somehow recover to the point I had more options. Even when I enjoyed myself working, I thought it wasn’t smart to continue writing, ‘because there already are so many underpaid writers’.

One day I ‘met’ Maggie McCarey, an indie author, online. She invited me out of the blue to a writing project with multiple contributors: a book about, by and for people with lipedema. Although its printed days were short-lived, it was an amazing experience and got us in touch with so many people across the globe. It sparked initiative and gave people confirmation they were not alone. The response was overwhelming.

After the book was published, Maggie and I went cold turkey and it didn’t agree with us. We decided to start a blog about lipedema, where we could happily explore all the little sidelines and topics we had been unable to fit into the book. A blog is a wonderful playground; there’s so much room for experimentation. We got on the soapbox, played with humor, threw scientific papers at our readers and invited guest bloggers.

However, the blog didn’t satisfy my hunger to write; it only fuelled it. Book, book, book, it went in red, blinking neon letters in my head. We had experienced the luxury of touching people, connecting with people, getting a better understanding of our condition: all because of a book. You can’t go back after that. I was now hooked to writing. Book, book, book it went. But what book? There was no book.

Once again lipedema gave me a little push. One fine day I was doing absolutely nothing on a sunbed on a glorious beach in the Caribbean. Just wondering what else I could come up with to raise awareness for lipedema. Under that palm tree that question collided with ‘book’ and I decided to write my first piece of fiction about a girl with lipedema.

I started writing like mad, but threw it all out after a few months. I was trying too hard to make it about lipedema, which didn’t work for the storyline. Or maybe it just didn’t work for me. My health status doesn’t define me; why should it define my main character? So I started over and made the story my first priority. The main character still had lipedema, but in its early stages. I kept that as a small tribute to all those women who have this condition and a little reminder to myself how the idea for this book was born. Not until the very end, in the epilogue, the reader learns why the girl is such a slow mover. Until that point it is suspense blended with contemporary women’s fiction.

I found my bearings. Co-writing Lipedema – Help Hope Healing and blogging has helped me process my frustrations and disappointments regarding lipedema. It has also helped me work up the courage to write a novel. The first of more, I hope. I now understand writing is what I was meant to do all along. It feels right and I no longer feel limited, more like unlimited. Oddly I have a chronic illness to thank for that.

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Tatjana van der Krabben is a freelance content writer, editor and translator, as well as a writer of fiction. Her debut novel, Welcome…, is to be released later this year.
As a board member with LIPESE, LLC she reaches out to the public to raise awareness for the condition lipedema. Together with Maggie McCarey she wrote the self-help book Lipedema – Help Hope Healing (out of print) and co-blogs about life with lipedema for LIPESE (blog link: http://blog.lipese.com/. She lives in the Netherlands and writes both in English and in Dutch.
Facebook: https://www.facebook.com/TatjanaWrites

Twitter: https://twitter.com/tatjana_writes

Tags: featured. writing with chronic illnesses, lipedema, women writers

Category: Contemporary Women Writers, On Writing