Managing the Writing Life When You Have Lupus

Filed in Writers on Wellness by on November 9, 2016 • views: 1846

by Camela Thompson

camela-mainOddly, the biggest physical hurdle in my career as an author
is also the reason I started writing.

I have systemic lupus erythematosus, an autoimmune disease that can target one or many systems.

My body’s immune cells don’t recognize friend from foe, and periods of stress can trigger these cells into a hyperactive state.

Diagnosed with Lupus—Now What?

Lupus is difficult to diagnose because the disease mimics many other ailments and there isn’t any single test that’s reliable.

It’s common to have more than one autoimmune disease in addition to lupus (I also struggle with hypothyroidism, celiac disease, and mast cell hyperactivity), which confuses the diagnosis process.

I felt lucky that my doctors figured out what was wrong after an eighteen month flare. The average time to diagnosis used to be ten years (doctors are getting better at recognizing the symptoms).

I’m lucky because I usually function close to on par with “normal” people, but when I’m at my worst I have a really hard time walking on my own, battle low grade fevers, and experience debilitating fatigue (among other things).

Lupus Makes it Very Difficult to Work

When my lupus flares up, it can become very difficult for me to be function at work.

I need help getting around the house, my spine becomes inflamed, I lose a lot of weight spontaneously, and I experience mental sluggishness and circulatory issues.

I have it pretty easy compared to many patients who have heart or kidney issues related to the disease.

At my best, I seem no different from the next person. I’ve had healthy stretches spanning over a year when I’m able to run and lift weights.

I Find the Act of Writing Healing

I started writing because I was stuck at home on medical leave and bored.

I enjoyed writing as a child and it was easier on my hands and headaches than painting. It’s no coincidence that I love writing about supernatural creatures who have limitless strength and the ability to regenerate.

Spending so much time steeped in illness throughout my life made writing about someone with the potential to change into something powerful very attractive. Many of my stories also feature physical weakness or illness, bringing the contrast I experience in my own life.

I find the act of writing healing, letting me examine my frustration with my system’s shortcomings from a safe distance.

Working with a plotting board method called "Plotting by Color"—a take on "Save the Cat" by Cherry Adair.

Working with a plotting board method called “Plotting by Color”—a take on “Save the Cat” by Cherry Adair.

Finding My Writing Niche

Initially, I wrote for myself. I focused on stories I wanted to read and places I wanted to mentally escape to.

When I wrote All the Pretty Bones, I felt I had a concept that appealed to a broader audience. The story takes place in a world ripe with the supernatural and follows a woman with a severe illness who decides to seek vengeance against her stalker.

I found a publisher quickly, and while my writing focus evolved into producing work at a quicker pace, the vampires in my series kept that element of youthful regeneration I crave in my story telling.

Unfortunately, illnesses are often tied to stress levels, and lupus is no exception.

When Writing Becomes Another Full-Time Job

My novels haven’t taken off like I had hoped (yet), and it’s necessary to keep my corporate job for the income and medical insurance.

Not only did I try to produce additional books quickly, the social media and marketing demands of being an author proved to be just as much as a full time job as my corporate day job.

Annie is my little canine assistant and insists on helping whenever I plot, hike, or paint. She's a wonderful break enforcer and will crawl onto my laptop if I work too hard.

Annie is my little canine assistant and insists on helping whenever I plot, hike, or paint. She’s a wonderful break enforcer and will crawl onto my laptop if I work too hard.

My publisher didn’t give me an ultimatum in terms of productivity, but I felt driven to contribute as much as possible because all things pointed to my success as an author depending upon it.

I placed a tremendous amount of pressure on myself while seeing very little reward in terms of sales.

My publisher, Booktrope, announced it was closing its doors in April. The announcement came in the midst of preparing my third book in The Hunted series, Visions & Bones, for publication.

Booktrope reverted my rights back to me quickly, and I worked hard to get my books ready to go back online within a month. Visions & Bones went online a month later.

Sometimes You Have to Take a Break

Considering all I’ve revealed about lupus and the correlation between illness and stress, I suppose you’ve probably figured out that my publisher’s closure led to a flare up. It took some ominous symptoms for me to get the hint.

After a monthlong series of migraines, I set aside writing and marketing. Now that I’m self-published, the only person who suffers from lack of sales is me.

Once I realized that the pressure I had been putting on myself to market and sell was self-imposed, I gave myself permission to take a much needed break.

I’m still struggling to manage some flare up symptoms, but I’ve been able to spend more time doing the things I love rather than spending my spare time catching up on much needed sleep.

Implementing A Wellness Plan of Action

The odd thing about lupus is that those long stretches of relative wellness can be deceiving and lead to a sense that it may never come back. Each time the symptoms return, there’s a spark of disappointment and surprise.

Fortunately, I’ve been living with lupus long enough that once I do recognize the symptoms, I have an action plan.

I eat a very clean diet (no processed foods, dairy, gluten, soy, corn, or GMO foods), but I am very strict when I’m symptomatic. I adhere to the FODMAP diet and also avoid sugar and allowed alcohol.

I’ve found that alcohol is so inflammatory that a single glass can leave my spine stiff the next day. When I’m not able to run or lift weights, I walk as much as possible.

It’s counterintuitive, but keeping in motion is critical when my joints start to lock up.

Camela hiking with Annie to the Twin Falls up in Snoqualmie, Washington.

Camela hiking with Annie to the Twin Falls up in Snoqualmie, Washington.

Sometimes “Author Work” Has to Wait

In addition to changing my physical routine, it’s imperative to find ways to alleviate stress during a flare up.

For now, I’ve cut back on my social media activity and writing. I have learned to listen to my body, and right now it needs sleep. I only have energy to make it through the work day and use my time at home to relax rather than cue up tweets, write my stories, and blog.

In the weeks since the mild flare up began, I have slowly reintroduced author elements back into my routine, but I’m not in a rush.

Even the Healthiest Among Us Must Strike a Balance

Life as an author can add tremendous pressure to life, especially if you aspire to make it as a career novelist.

The market is more competitive than ever with the staggering volume of books published each day. Chances are high that you will have to maintain a primary career outside of writing.

Even the healthiest amongst us must strike a balance to avoid taxing our bodies to the point of illness.

I urge you to be mindful and find balance in your own life before faced with a health crisis. Carve out time for the things you enjoy, whether it be cooking, video gaming, or socializing with friends.

Writing is often an important part of us and a way to express ourselves. It doesn’t dry up or go away when you set it aside to take care of yourself.

I know that when I’m ready to focus on writing again, I won’t be at a loss for words.

Advice for a Young Writer: Don’t Try to Go It Alone

Find other writers you can respect and support who will respect and support you in return.

Don’t try to go it alone.

Writers’ conferences and continuing education courses at colleges are fantastic places to meet people. I had a woman scoff at me once when I suggested a community college course because she had an MFA, but she joined a class and gained a writing group that has lasted years.

My own writing group has a diverse group of people with different strengths, and we take turns helping one another.

Writing doesn’t have to be a lonely path.

* * *

Camela Thompson lives with her incredibly supportive husband and strange dog in Seattle, the city where cloud cover and shadows rule. How else is a girl supposed to keep her luminescent (perfectly pasty) complexion?

The rain also provides the perfect scapegoat for hiding inside with a laptop, her dog, and a hot cup of tea. Excuses for reclusive behavior get considerably more creative during the summer (she may or may not have a mild sun allergy).

For more information on Camela and her work, please see her website, or connect with her on Facebook, Twitter, Instagram, and Pinterest.

all-the-pretty-bonesAll the Pretty Bones  (Book I of “The Hunted” Series): In a world where demons and vampires lurk just beneath the surface, what you don’t know can kill you.

After ten years of living in the shadow of her stalker, a diagnosis of terminal cancer pushes Olivia Kardos to take matters into her own hands. Her final days will not be spent isolated from the world, nor hiding like a hunted animal. It’s time for Mark Porter to die. Going against a trained killer alone would be foolish, unless she’s armed. A handsome black-market arms dealer—one who reminds her of the tales her grandmother spun of the old country—hides a secret of his own. Lucian is drawn to her, going against his many lifetimes of instinct. Olivia threatens his very existence, yet he cannot help but want to protect her.

Homicide Detective Sean Howard has managed to push his amber-eyed ex out of his mind—until his latest case brings her crashing back into his life. A woman is found exsanguinated and brutally stabbed in Seattle’s Queen Anne neighborhood, and she could be Olivia’s twin. As the victim count and the similarities grow, Sean can’t shake the feeling that Olivia is next. Is it worth risking his life, his marriage, and his sanity to find the killer and help the woman who still haunts his dreams?

Will Olivia’s secrets bring her freedom or be her final undoing? Available at Amazon.

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Comments (3)

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  1. Laura says:

    Hugs. I always am happy when I hear you are feeling healthy, and sad when you aren’t. Take care.

    “It’s counterintuitive, but keeping in motion is critical when my joints start to lock up.”
    I can’t recommend Katy Bowman’s work enough. She has spent a lot of time and produced a lot of information on why it is actually really intuitive. Her podcast “Katy Says” is fantastic. She also has a ton of downloadable restorative exercise videos and this free one that is amazing for the shoulders.

  2. Thank you for your kind words! IBS can make it very difficult to travel, much less run errands. I feel your pain and hope it calms down for you.

    My writing will pick up again, but I’m giving myself a little more time to relax. Forcing writing really takes the joy out of things.

  3. Kathy Scott says:

    I applaud your courage to continue writing and maintaining a balance in your life when health is a priority. Thanks for giving me a glimpse of how to deal with difficulties and pace myself to write when my body is feeling well and not to stress out when I demand too much effort to produce great writing. It’s such a joy to write, but I need to be sensitive to my body’s needs. I have asthma and IBS which can be counterproductive to getting out much. I hope your writing continues and you find the time and energy to complete your goals in writing.