Learning how to write with chronic illness has been never-ending. For most of my adult life I’ve struggled with severe, crippling migraines. For years I went to bed wondering if I’d wake up with a migraine, my head tingling and tensing. A good month meant I’d only had one 72 hour episode. A bad month could look like 4-6 migraine episodes. There were many dark days and lots of plans came to a screeching halt. Never knowing what might happen made it difficult for me to make plans of any kind.
Over the last year I’ve received an enormous amount of relief in the form of therapy, gentle movement, and targeted supplements. I never realized how much of an impact mental health and nutritional deficiencies could have on my body. However, throughout my struggle with pain, and the unpredictability of how my body would react, I learned how to navigate my life in spite of illness. Why? I got tired of letting it win. So here’s what I’ve learned and what’s helped me.
Add Cushion Time for Writing with Chronic Illness
No matter what my plans are, I constantly remind myself to add “cushion”. If I come down with a migraine then life is going to pause whether I want it to or not. When I can barely stand up long enough to get some water or go to the bathroom, then I can’t go to work. When the throbbing pain doesn’t stop even while I’m lying perfectly still in bed, then I can’t think. Migraine is a thief, it steals away time and life. Over the years I’ve learned to carefully allow extra time for tasks and word count goals to be completed.
For example, if I hope to complete writing a chapter then I should add at least one day to whatever my goal is. Or, if I plan to finish editing a book then I should probably add 3-5 days cushion to whatever my goal is. Giving myself extra time to accomplish the things I hope to accomplish relieves pressure and stress. As an Indie Author, all deadlines and timelines are my own. I’m the only one in charge of making things happen, and I’m the only one putting pressure on myself. It’s a lie that I must publish a book a year, or write a blog post every week.
Choosing to add cushion sets me up for success. Choosing to adhere to some strict, made-up schedule I created sets me up for disappointment and failure. Cushion is a good thing. In the end, that cushion time usually means I accomplish more rather than less.
Have Grace when Writing with Chronic Illness
Chronic illness is hard enough to deal with without adding on the burdens of guilt and fear. Migraine affects my mood and tends to make me more irritable and depressed when I’m coming out of an episode and the pain is fading. During this time, it’s easy for me to feel as if I somehow failed or like I’m “behind”. The truth is that it will more than likely take me longer to finish some things than if I didn’t have migraine episodes. But there’s nothing wrong with that!
Life won’t look the same for those who suffer with any type of chronic illness or chronic pain as it does for those without. I’ve been on a long journey of learning to have grace for myself and my body. Beating myself up because of something I can’t control will not make the problem go away. Speaking harshly or judgmentally to myself will not advance my hopes and dreams. Being mean to myself only makes things worse, and it’s not a fair thing to do.
If I wouldn’t speak or act this way toward a loved one, why am I doing it to myself? Why is grace not a given for the times of recovery? Why are kind words not my default when my body has fought so hard to recuperate? It took me a long time to realize that grace and kindness are necessary. Now I fight for them every time.
Lean Into the Pain of Writing with Chronic Illness
Long-term pain and illness have definitely played a part in what I write about and how I write. Continuous nightmares were the catalyst for writing my first book, Child of Shadows. Writing gave me relief from the mental anguish I experienced. I got tired of letting the nightmares control me, torturing my sleep. So I turned to writing and used the ugliest part of my life to create something beautiful.
I’ve done the same thing with chronic illness. Leaning into the pain of migraines has made me a better writer. I understand what it is to lose control over your faculties. I know how defeating and vulnerable pain makes me feel. When I meet others with debilitating pain or disease I generally have a better understanding of what they’re going through. I tend to avoid large gatherings, bright lights, or loud noises as all those things tend to overwhelm me and aggravate my symptoms. But when I am around people I watch them closely.
Because of the quietness and solitude I both have and crave, I also long to understand how other people function and think. I listen to the inflections in someone’s voice, store away interesting details about their lives, and study every quirk I can find. I want to know what makes other people feel alive. What do they value? How do they think about life? What do they believe about the weak and vulnerable?
Do You Struggle with Chronic Illness?
If you do, I’d love to hear your thoughts. What helps you through the pain? What has the pain taught you? Do you believe it’s made you a better writer or a better creative in general? Does your pain give you compassion toward others in pain?
I hope this post has encouraged you whether you struggle with migraines or not. Learning how to manage and write with chronic illness can be challenging. But I’ve become a firm believer that it doesn’t need to dictate how I live my life. There’s so much I want to do in life. I’m determined to make the most of my talents and passions – even if it takes me longer than someone who doesn’t struggle with chronic illness.
Much love,
Ellen
Ellen ES Ceely 
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