A Little Bit of Lupus - Guest Post by Author Megan O'Russell

Author Megan O'Russell

Along with being a blogger, I'm also a young adult author. One of the cool things about this is that I get to connect with other authors from around the world. Like any career, writing can be tricky when you're living with chronic illness, but it is more forgiving than many other jobs, and it certainly provides other benefits and ways to cope with the harder parts of illness. Someone who understands this is my fellow author Megan O'Russell. Like me, Megan is living with lupus and writing young adult novels (her writing is brilliant by the way - highly recommend How I Magically Messed Up My Life in Four Friggin' Days.) Unlike me, she's also juggling a career as a musical theatre performer and living in a tour bus!

Megan's been kind enough today to take time out of her busy schedule, promoting her new book Boy of Blood to tell us a bit about her fascinating life and about her lupus story.  

A Little Bit of Lupus by Megan O'Russell

I was diagnosed with Lupus after one freak day when I was twenty-three. It had been snowing during the night, and I was too nervous to pull off the highway to get gas on the way to work.

Fast forward to the end of the day. I was stuck in a parking lot with a dead car battery, no gas, and really terrible frostbite, even though the temperature had jumped up to 50 Fahrenheit (10 Celsius).

My husband insisted that I go to the doctor and have my gray fingers looked at. Luckily for me, the doctor at the urgent care took the time to ask how I had gotten frostbite and was diligent enough to realize something wasn’t right. About a week later, I was seeing my first Rheumatologist with a diagnosis of S.L.E.

That was… we’ll just say a while ago.

And here’s the thing. For someone who’s been living with autoimmune for a while, I’m really pretty healthy. I make my living singing and dancing on stage as a musical theatre performer. I’m also an author with three different series at two different publishers.

Right now, I’m on a national tour of a show where I spend much of my allotted sleep time curled up on the floor of a bus. Sleeping under my bus seat isn’t as bad as it sounds, but still, not something that you picture someone with a chronic illness pulling off.

Whenever I tell someone I have Lupus, either in casual conversation, or because I need them to know, I feel like an imposter. If I can dance on stage, I’m not really sick right? If you can hike a mountain, do I actually need to go see a doctor?

It comes from all sides. I had a lab tech laugh at me because he didn’t know why he needed to do a chest scan on someone who’s still sweaty from doing a 5K (I’d say running, but my lungs were in bad shape and I’m not great at self cooling, so it was like a 2.5k run/2.5k shamble along).

My husband almost stopped talking to some of our friends because they could not understand why I could possibly need to sleep between shows. They thought I was just being lazy and territorial in my wanting to nap in my room. Nope. I have to sleep to stay off steroids.

Trying to explain to each new team I work with on a show that, yes, I have Lupus. No, you won’t ever notice on stage. The spilt between treating me like a hypochondriac and an egg shell are about 50/30 (20% are really awesome).

I was at the doctor not too long ago because I wasn’t breathing very well. Her response: “How are you dancing if you can’t breathe?” I see lots of spots and try not to fall over, that’s how.

The other actors do crazy workouts before the show. I have to save my energy for the stage.

Some of the people we travel with only manage to sneak in a few hours of sleep a night. I’m not trying to compete with how little sleep they’re able to get when I say I’m just plain old exhausted. Not from lack of sleep, just from existing with an auto-immune disease.

And… I still feel like an imposter because I’m not that sick. Even at my worst, I’m still surviving.

Maybe that’s why I’ve turned so whole-heartedly to writing. A profession where it doesn’t matter if your lungs are acting funky, and no one cares if I look a little dead behind the eyes.

In acting, the first thing I do in my workday is go into a dressing room and strip down with my coworkers. There’s nowhere to hide the dent in my legs from the steroid injections.

My characters don’t care about the thigh dents. My literary agent doesn’t care if my cheeks are puffy from steroids.

I am completely safe and competent while writing. I can create a world where monsters reign and magic is a constant battle while icing my knees. The magic of first love can be created while my whole torso (at least it feels like my whole torso) is covered in Vicks.

Acting and writing are both forms of storytelling, but when living with auto-immune, they are the exact opposites.

My word count doesn’t give me a five minute warning that I’m about to start a two hour creative sprint that will stop for nothing short of the theatre catching fire.

If my brain can’t sort through how to finish a scene, I click save and shut the computer. And you know what? My characters can’t complain. Why? Because I shut the computer, so ha!

In writing, I’m in charge. I get to say how much or how little I’ll do on any given day. I have the power to take a step back for a moment, and no one will take the story from me because it’s mine.

I’m not an imposter. I’m an author. And the author writes the rules… literally.

And there’s something in spending more time as an author, in finding a venue outside the stage lights where I’m useful and competent, that’s made it much simpler for me to say no in other aspects of life as well.

No, you’re wrong. Just because I don’t look sick doesn’t mean I’m fine and just need a cup of coffee.

No, I don’t have to go to the gym everyday before the show just to keep up appearances. I’d rather not have fire shooting through all my joints, thank you very much.

Page or stage, I am living and thriving with Lupus. And it doesn’t really matter who can’t believe I’m ill.

I am more than just my messed up little body. I am a useful, competent, worthy human, and I am not an imposter. Lupus is one small part of my enormous and overwhelming life. My story is my own.

Megan is a native of Upstate New York who spends her time traveling the country as a professional actor. Megan's current published works include the Girl of Glass series, How I Magically Messed Up My Life in Four Freakin' Days (The Tale of Bryant Adams, Book One), and The Girl Without Magic (The Chronicles of Maggie Trent, Book One).

When not on stage or working on her books, Megan can be found blogging on LifeBeyondExaggeration.com

For more information on Megan's books and for Megan’s author blog, visit MeganORussell.com.