Tips for Managing Writing and Chronic Illness

By Alyssa Hollingsworth, @alyssa__holly

Part of the How They Do It Series

JH: Being a writer can be tough under the best of circumstances, but it's even more difficult when you're dealing with an illness you can't simply ignore. Please help me welcome Alyssa Hollingsworth to the lecture hall today, to share tips and advice on writing while managing a chronic illness.

Alyssa was born in small-town Milton, Florida, but life as a roving military kid soon mellowed her (unintelligibly strong) Southern accent. Wanderlust is in her blood, and she's always waiting for the wind to change. Stories remain her constant.

She got her BA in English with an emphasis in Creative Writing from Berry College and my MA with honors in Writing for Young People at Bath Spa University. She’ll happily talk your ear off about either of these programs — they both rocked!

The Eleventh Trade is her debut novel with Roaring Brook/Macmillan (U.S.) and Piccadilly Press (U.K.), as well as a handful of other foreign publishers. This will be followed by a separate book in Fall 2019.

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Take it away Alyssa...

Long before I had a chronic illness, I was a young writer. Then Rheumatoid Arthritis entered with dramatic flare (pun), jealously pursued by about seven other chronic illnesses over the last ten years. Then I signed with a lovely agent, then a few publishers, and now I’m on the cusp of my debut’s release.

But there’s a funny thing about chronic illness: It might ebb off for a little while, but it never stays away. Even when you have deadlines. Even when you have events.

Below are techniques I use to help me manage my chronic illnesses. Every person and every diagnosis is different, so take what’s useful and leave the rest.

1. Create a Self-Care Plan

Grab a journal and spend some time reflecting on your chronic illness struggles. Make a list of things that sometimes trigger episodes of illness. These can be physical (for instance: gluten, heat, travel) but you might also think about the emotional red flags that lead to a flare (such as: family events, crowded places, reading a lot of news).

After you have a list of common triggers, make another list of signs that signal you’re about to crash. Some people will start spacing out while they drive, others might overeat. Personally, I tend to buy a ton (especially gifts for others) and volunteer to help a thousand people with a thousand things. When I catch myself doing this, I know I’m on the verge of a breakdown.

Finally, make a list of activities that help you feel better. If it’s helpful, you can even make a list of daily small tasks that help you (such as: making your bed or taking a shower) and bigger tasks to address larger attacks (such as: take a day off from everything or get a massage).

The workbook Wellness Recovery Action Plan is an absolutely amazing resource for this exercise.

2. Modify Expectations

Most of us are familiar with the Spoon Theory, but if you haven’t heard this wonderful metaphor: The idea is that people with chronic illness (“spoonies”) have a limited amount of energy (represented by a specific number spoons) every day. Once you use all your spoons, you have none left and it’s time to rest.

One of the first steps in managing your chronic illness is to begin asking yourself, “How many spoons do I have today? How many do I need to save for this week?” This helps you modify your expectations for yourself into a doable spectrum.

For instance, instead of writing every day of the week, you give yourself specific rest days to save some spoons. Or when outside circumstances take your emotional and physical energy, you give yourself permission to get feedback to your critique partner tomorrow.

No one wins when we push ourselves past the burn point. And when you have chronic illness, you could do permanent damage to yourself. Your body keeps the score, after all. So allow yourself to compromise when you need to. Be honest with yourself (and get feedback from loved ones who know you) about when it’s time to push through and when it’s time to let go.

3. Be Kind to Yourself

We all have a vision of who we are and what we can do. When something happens that crushes that picture, it can be devastating. Like, I thought the assumption that my fingers wouldn’t collapse at random was a pretty low-maintenance assumption. But that’s not what my life looks like now.

When you get bowled over by your illness, you should absolutely grieve if you feel like grieving. I don’t care if this is the first time or the twentieth time. That feeling like you’re being chipped apart -- that doesn’t get easier. You’re allowed to be sad.

But also, you can forgive yourself and your body. This isn’t what anyone would choose, but it’s what is. Even though chronic illness is hard, you can make it a little easier by having compassion on yourself. Shifting your boundaries or freeing yourself from a goal might feel like a defeat -- but sometimes it’s just what you need to do to protect your body or spirit. And just because you need to compromise this time doesn’t mean it’ll always be like this.

So, give yourself a break. And some chocolate.

4. Be as Honest as You Feel Comfortable

Both chronic illness and writing are very isolating things. Depending on how comfortable you are with the people in your life, it can be a good idea to share your struggles so that you can get support. Not everyone has to know every minute detail. But often your family, friends, literary agent, and even publishers can step in as your advocates.

As I mentioned, my first book is about to come out (yay!). Early into my conversation with my agent, publisher, and publicist, I mentioned that my arthritis prevents me from holding a pen for very long. That might be a complication at book signings, especially considering the length of my name! We’ve brainstormed ways around it (like a signature stamp and a fancy but easy initials-only signature) and all the people on my team know it’s okay to be honest with event coordinators about why I have to take certain precautions.

At one point in my life, I might have bit my tongue and tried to push through without complaint. But this way is a much healthier alternative.

Writing is a demanding task, even without heaping chronic illness on top. But it is possible to take care of yourself, get stuff done, and even thrive.

About The Eleventh Trade

They say you can't get something for nothing, but nothing is all Sami has. When his grandfather’s most-prized possession―a traditional Afghan instrument called a rebab―is stolen, Sami resolves to get it back. He finds it at a music store, but it costs $700, and Sami doesn’t have even one penny. What he does have is a keychain that has caught the eye of his classmate. If he trades the keychain for something more valuable, could he keep trading until he has $700? Sami is about to find out.

The Eleventh Trade is both a classic middle school story and a story about being a refugee. Alyssa Hollingsworth tackles a big issue with a light touch.

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