The Unhealthy Writer: 7 Tips on Writing with a Chronic Illness

You can be a writer, even with a chronic illness. As a matter of fact, the combination of the two may be more powerful than you might have imagined.

I’ve had Crohn’s disease since I graduated college 30 years ago and it’s tried to kill me a number of times. I’ve had six major surgeries, many of which had post-operative complications. I’m fortunate to have medication that helps tame the beast, but the disease is never in remission and never stops attacking me.

Despite the limitations it has forced upon me, I won’t let it stop me from doing what I love…

Writing.

You can be a writer, even with a chronic illness. As a matter of fact, the combination of the two may be more powerful than you might have imagined.

Despite the limitations it has forced upon me, I won’t let it stop me from doing what I love…

Writing.

My disease has brought out the best and worst in me. It’s destroyed my dreams while also making me a better husband, a more attentive father, and a devoutly faithful man. It has influenced what I write and how I express my creativity.

For those of you unaffected by a chronic illness, you should know that, upon diagnosis, sufferers normally go through the five stages of grief.

Denial, Anger, Bargaining, Depression and Acceptance

For me, it looked something like this.

First, I refused to accept I had Crohn’s. I knew it mentally, but I refused to believe it was going to change anything. I was 23 years old. I had plans, disease or no disease.
I grew angry when the disease became more of a nuisance, upset for having been given something for which I had no control and for how it could stop me from reaching my goals.
The disease persisted and I started to give in, but not completely. I did what the doctors told me to do, sort of, as long as it was on my terms. I was determined to live my life the way I wanted, despite having Crohn’s. I was going to push through. Nothing was going to get in the way of my dreams.
Eventually, after the disease nearly killed me a couple of times, I was forced to alter my life. In the process, I had to strip away many of my dreams I’d had since I was a child. In a very real way, I felt a portion of me had died. I was going to let down the nine-year-old boy inside of me who loved telling stories. But, I didn’t have any other choice. There was nothing I could do about it. Worst of all, I realized the battle against this disease would continue for the rest of my life.
Finally, having lived with the disease long enough to learn to anticipate it, I realized I needed to focus on what I could control, not on what I couldn’t. I needed to do what the doctors said, never waver from my strict diet, and be ready when the disease decided to amp it up. Most of all, I needed to figure out how I can live a fulfilling life with Crohn’s.

How long one stays in each stage depends on the disease, that person’s tenacity and their determination. For me, I had to convert my big dreams into smaller, achievable goals. To reach them, I had to be more persistent than the disease was relentless.

Through this struggle, I’ve learned a lot about being a writer with a chronic illness and I’d like to share it with you.

1) Don’t let the disease define you.

Your illness is a burden, not a personality trait.

I’m not Crohn’s Pete. I’m Pete who struggles with Crohn’s. I wanted to keep those two things separate and I learned a trick to do just that.

Until this blog post, I never wanted anyone who met me or worked with me to know I had Crohn’s unless it was absolutely necessary.

I didn’t want people to see the disease when they looked at me.

I wanted them to see me.

I’ve met a lot of people with chronic illnesses that have allowed that illness to redefine them.

It invades every aspect of their lives, yet they have no control over it because the disease has a will of its own. It doesn’t ask for their opinion or permission. It acts on its own accord. So, it overwhelms them and takes over their identity.

In the beginning, I understood that. I didn’t know how to separate the disease from me and when I wasn’t feeling well, my wife and my kids just thought I was just sick. It was me. All me.

Then I read how psychologists suggested that sufferers of a chronic illness give it a name. A pronoun name, like Sally or Dave or Booster. Give it it’s own identity.

I know this sounds silly, but psychologically, it’s a game changer.

Using their advice, let’s say I named my Crohn’s Dave.

When my illness reared its ugly head, I could tell my family Dave was kicking my butt. Then, my wife and kids knew that I wasn’t the issue, my disease was. By calling it Dave, we were separating it from me and they weren’t frustrated with me for being sick, they were frustrated at the disease.

I know that sounds simple, but it works, and I can’t tell what a difference that small change has made for me and my family.

2) Focus on the joys you can experience, not on the experiences you can’t enjoy.

Before I got sick, I wanted to go everywhere and do everything. I wanted to tell stories and make movies.

But, after I got sick, the limitations of my illness shrunk my world and most of my bucket list was erased without my permission.

I couldn’t go anywhere unless I knew I’d have food I could tolerate, hospitals with the care I needed, and bathrooms, in case of emergencies.

If I couldn’t control the journey, I stayed home.

For a long time, that made me bitter. I hung out in the Anger phase for years.

Fortunately, I came to appreciate how abundantly diverse life could be, even in a small sample size, and I learned how to find a lifetime of happiness in my limited life.

I still travel, just not everywhere I’d like to go. I have satisfying personal and professional experiences, just not all those that I wanted.

Plus, as a writer, I get to create adventures with characters stronger than me who get to go places I will never see and partake of pleasures I will never feel. Through them, I experience the life outside my reach and, in those words you write, your readers will feel your longing, excitement and passion.

More importantly, my illness has clarified my priorities.

Faith. Family. Friends. Writing.

In those few things I find all the joy I could ever want.

3) Your brain will do whatever you tell it, so train it well.

Your brain is your best ally or your worst enemy, depending on what you tell it to do. It doesn’t care, it simply does what is asked of it.

So, if you tell it to focus on your health issues, it will highlight every time your disease impedes your life. If you tell it to focus on your creativity, it will look for ideas to fill that well.

If you tell it to focus on how you fail, it will point out every time you fail. If you tell it to focus on how you’re improving, it will point that out as well.

When I transitioned from writing screenplays to novels, I told my brain to figure out how to tell a story in novel form so, when an idea popped into my head, I wouldn’t think of how to capture it on camera, but how to express it through the eyes of the protagonist. I fed my brain fiction books in my genre and non-fiction books about the craft. I fed it podcasts and self-publishing conferences.

Slowly, I could feel it working.

In the mean time, I forced myself to write in novel form. It was painful, like chiseling words into my own skin, but I persisted. I wrote one novel over 100 times. I wrote another one over 20 times. I could feel my brain working it out. With each draft I got closer to unlocking the process and, every once in a while, I would have moments where the idea was strong, the expression, clear, and the words flowed.

Unfortunately, as quickly as those moments came, they disappeared, and I went back to chiseling. But the flashes of clarity grew more frequent and I knew my brain was getting close. I knew I was nearly there when I started to call my future fans “readers” instead of “the audience.”

Now, my brain has been successfully rewired and I think of story ideas as novels first and screenplays second, because that’s what I told it to do.

Your brain truly doesn’t care what you tell it to do. It’s a loyal servant and the most powerful weapon you have in your arsenal.

Make sure it’s pointing in the right direction.

4) Time is the only gift that can’t be returned or replaced – don’t waste it.

Sometimes your illness will get in the way, while other times it will leave you alone. Either way, use your time well, whether it’s limited or abundant. It is your most precious commodity.

This was never more visible to me than when, years ago, I was very sick, my children were young and my health was on a downward spiral. I had come to terms with the possibility that my kids would grow up without me. Worse than that, there was a good chance they’d never remember who I was, as if I never existed to them.

Accepting that possibility devastated me.

However, when a new medication started to work, and the end of my life extended out ahead me once again, I felt as if sand had been added to my hourglass. Because of that moment, I have never taken time for granted again.

That’s why wasting my time is my biggest pet peeve and I only invest it in the things which I mentioned before – Church, family events, close friendships, and creating stories.

Anything outside of those four areas will be hard pressed to end up on my calendar.

So, cherish your time. Do the most when you have the most time. Write when you’re well. Plan when you’re sick. Don’t let a day pass without having moved closer to your goals, because you’ll never get that time back.

5) You’re either enabling good behavior or bad behavior, there is no middle ground.

It’s important to be honest with yourself and I’ve come to realize we’re either enabling good or bad behavior, in our own lives or the lives of others. There is no middle ground. There are no gray areas.

This is especially true when dealing with a chronic illness.

Enable good in yourself and others by being the best person you can, no matter how bad you feel. You can show strength to others when you feel weak. You can show patience when you are frustrated with the struggle. You can be an example of hope in a hopeless situation.

Enable the part of you that is a doer, not a dreamer, because people are a reflection of their actions, not their words.

Wanting and doing is the difference between a dream and a goal. The good news is achieving goals achieves dreams.

So, be good to yourself, those you know, and strangers you meet, because being good will enable good, and enabling good will bring out the best in you.

6) Writers write. It’s just that simple.

I’ve been writing stories since I was nine years old. It’s how I express myself. It’s how I make sense of the world. It’s how I define and face my greatest fears, including my health issues.

For most of my life, writing screenplays was my creative expression of choice. I started writing them as a boy and continued into my professional life. Even after leaving the entertainment industry, I still wrote at least one screenplay a year.

One day I looked at my bookshelf at the 30 screenplays I had written and realized my creative life was, in reality, a waste of shelf space. No one reads screenplays for fun. They are incomplete movies, blueprints of an idea directors and actors would bring to fulfillment, and I had a shelf full of them.

They were stories no one would ever read and, when I looked at them, I began to regret every second I had invested in their creation.

And then, the Kindle came out. My health wasn’t great at the time, but I was determined to finish at least one story in a medium others could consume, as novels. So, I created the Gabby Wells Thrillers, my first novel series, writing four books over four years during which I had three major surgeries.

I don’t say that as a badge of honor. I’m sharing this because my writing helped me express the struggles with my health and, feeling the pressure of time, not knowing how many seconds were left on my clock, I was determined to tell Gabby’s tale, to create at least one shareable story, before something tragic could happen to me.

That urgency has become the way I live every day.

Use your time wisely, with those you love, and leave your imprint in this world through the stories you create.

7) And finally… Love yourself, scars and all – and your muse will quickly follow.

When I first got married, I exercised a lot. I was muscular, fit and had six-pack abs. After two surgeries I told my wife the best I could offer her was two-liter abs and, after six surgeries, that may one day turn into a kegger.

I look in the mirror at the scars across my stomach and the body 30 years of Crohn’s has left me. That reflection is not the man I thought I would become.

Yet, I can’t change it.

My reflection is me and, instead of pining for the life that was stolen from me, I have chosen to focus on the years still ahead of me.

Because, at the end of the day, if you have a chronic illness, you’re a daily survivor. Depending on the invasiveness of your disease, that may be no small feat. And, if you’ve gotten used to the struggle, managing it well for another day is a worthy achievement.

Your illness may put a cramp in your style, put a halt to to your writing times, and leave lasting scars either in your body or in your mind, but learn to love it just the same. The things that challenges you the most, like a disease that never gives up on you, makes you stronger, separating the important from the frivolous.

Love your tenacity and strength.

And, once you do that, you can use your illness as a powerful story telling weapon.

When I describe a hospital room in my stories, you’ll know it comes from an authentic place. The smells, the sounds, the discomfort, and the harsh, thin bed sheets that have never been touched by fabric softener.

When my characters want more time, yet also feel like they wouldn’t care if their life ended the next second, you’ll know that comes from my own personal experiences.

In my new series, the Damien Hill Thrillers, the main character is a rookie police officer who gets caught up in a riot and the after effects alter his life forever. He struggles between the man he was and the man he has become, between the dreams for which he longed and the reality he must face. That inspiration came from being dealt a chronic illness when my adult life was just starting. Readers tell me Damien’s struggle resonates with them and I believe it’s because I have already lived it, albeit with different challenges and limitations.

Use your illness to create authenticity in your characters’ struggles. Use it to fashion deep and meaningful themes in your work. Use it to tug at the emotions and create heart-wrenching choices for your character.

Your illness, for its potential negativity, can also be a part of the creative font from which your ideas and writer’s voice flow.

Make it your Excalibur, not your Kryptonite (genre mash-up, I know).

Don’t let your disease alter your identity, define your life, or keep you from telling the stories you want to share.

You can’t always control your health, but you can control how it affects you.

Writers write.

Keep typing.