Sneaking a poorly known medical condition into fiction

By Tatjana van der Krabben

Lipedema: a poorly understood yet common condition that causes the legs, hips, buttocks, and sometimes arms as well to swell with fat and fluid. Diet and exercise help manage the condition, but won’t make it go away. The swelling changes your appearance, is painful, and hinders mobility.

I devote a lot of time to raising awareness for lipedema, a condition I have myself. Some days, with social media already flooded with requests to share messages etc., you just can’t help but wonder: what else is there? On a sunbed on a gorgeous beach in the Caribbean, that question collided with another one: could I write fiction? I love writing different formats and fiction was still on my writer’s bucket list.

The clash of both questions was a happy one. Ideas started to come to me and evolved around a main character who conveniently has lipedema. Like many aspiring authors I was initially more like a perspiring author. It can feel silly to say out loud that you want to write a book, even after having published non-fiction already. Any book lover can tell you that a book is A Big Deal and writing one equally so.

In April/May 2013 I planned to go to New York and that location was firmly planted in my brain. The main character chose to stay there, so to speak. In May 2013 I was in Schenectady, New York and told Maggie McCarey, a friend, co-blogger with Lipese, and author, about my plan to write a book about a character with lipedema and asked her to be my editor*. From that moment on I truly felt like an aspiring author. I frantically took notes and pictures of locations I wanted to use. In June 2013 I started writing and in August I threw out what I had written so far. Idea vs. reality: a not so lucky clash.

I picked up the pieces and started over, writing nights. The setting was still New York City, but the lipedema became less prominent. First and foremost I wanted it to be a good book, not something that had to evolve around lipedema. After all, that’s not how we lead our lives. This condition gradually infringes upon our lives, but it doesn’t define you. Lipedema is something intangible until you – finally – figure out what it is. You may even take the symptoms for granted until someone points out this isn’t ‘normal’, which happened to me. It’s also how I worked it into the book.

Lipedema is not the plot, nor a key factor. Then why bother bringing it up in the book? I just hope this book will reach people who simply take an interest in the book itself and then casually learn a little bit about lipedema. In the end it will also make the main character, Anne, a little easier to understand; she’s not lazy or passive, but in fact she’s slowed down by pain and fatigue a lot of the time, which she, like so many of us until finally diagnosed, takes for granted for lack of answers.

WELCOME… will be self-published as an ebook. I haven’t even attempted to interest an agent or publisher. This is a story I want told as it is, including and specifically with the references to lipedema symptoms like subliminal messages. That’s the lipedema advocate in me. Also, for each book sold, $0.50 (of $3.99 sales price) will go toward lipedema research. I wanted to be free to make these decisions.

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WELCOME… - Anne, a 22-year-old dreamer, gets invited to stay in an upscale Manhattan apartment by her aunt, a wealthy widow with a zest for life. All Anne needs to do in exchange for a rent-free stay in New York, is to watch her aunt’s cat for six months while she enjoys an extended vacation in the Caribbean.

It looks like a sweet deal, and a great opportunity to escape failing friendships and an overbearing mother. Anne eagerly commits to the cushy job, but soon learns the arrangement is too good to be true…

Stay tuned for release info via Facebook: https://www.facebook.com/TatjanaWrites/

* Although the book was written with the help and support of Maggie McCarey, it is not a project by Lipese. Since this project does aim to raise awareness and research funds for lipedema, it has been granted a blog entry on this platform.