Wednesday, January 30, 2013

Writing Realistically About Chronic Illness

Me having a Remicade
infusion for my Crohn's
Twenty years ago, I was diagnosed with Crohn’s disease. For those that haven’t heard of it (and many haven’t), it’s an autoimmune disease of the digestive system. It can directly affect any part of the digestive system from your mouth all the way through, and it has quite the resume of extraintestinal complications as well. Let’s just say it ain’t fun.

A few years ago, I was excited to find a novel with a main character with Crohn’s disease. Anything involving frequent frenzied trips to the bathroom is not something that is generally discussed, much less written about. When I finally got the book, I ripped through it.

To say the book sugarcoated Crohn’s is an understatement. In a book about a character with a digestive disease, the word “toilet” wasn’t mentioned once. (I searched the book on my Kindle.) The effects of the disease and its treatments were glossed over, and how a chronic illness - much less this chronic illness - affects a relationship was not realistically portrayed.

(Don't get me wrong. I liked the book. I just wanted the Crohn's experience to be better described.)

I’m working on a book in which the main character has Crohn’s disease. Charlie is diagnosed when many are: right before he goes under the knife. His whole life is changing, and he’s just beginning to figure out how to live with a chronic illness. I will make sure the word “toilet” is in the book at least once ;)

But I also need to write a story about an illness I have without writing about my illness. I could curl your hair with some of my war stories, but that’s not all I want Charlie’s story to be about. I want to be realistic without being gloomy. As much as having Crohn’s sucks, I also have a good life otherwise. I am surrounded by love and support. I accomplish, I travel, and I celebrate, all despite the limits chronic illness places on me. I want Charlie to do the same.

If you have a chronic illness, have you found novels that realistically describe what it’s like to have the illness? If you’ve written about a chronically ill person, did you find it difficult to make sure your story still made the reader feel good at the end?

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Debra Glass said...

Great post, Kerry. My sister was born with Addison's and gave up the fight at age 42. It was very hard watching her try to live a normal life as a career woman, a mother, and a wife while battling it. Kudos to you, Kerry, for taking on a tough topic.

Ingeborg said...

My sister has had Crohn's disease since her early 20's. She is now 57. I consider her the strongest person I have ever known with what she has gone through. I appreciate you writing about this as many people have not even heard of it.

Meda White said...

Heart disease runs in my family and while I'm sure there are books out there about it, I don't remember reading one. I am working on a series of books about a family in which the patriarch has heart disease. Being Southern makes it a little difficult to adopt a healthier lifestyle when it comes to diet and exercise. I know this from my own experience. It can be done but is a daily struggle.

Autoimmunes are the worst. Best wishes in your continued fight.

Carla Swafford said...

One of the ladies I work with a the day job has Crohn's. She nearly died because of it. It's been tough but she has the greatest sense of humor.

Cancer and Alzheimer's are the ones I have experience with (not me but loved ones). And really I don't remember reading a book dealing with either.

Though I do have a partial written about a guy having to take care of his mother with Alzheimer's.

Kerry Freeman said...

Thanks everyone! My heart goes out to everyone dealing with an illness, both as a patient and as a family member/friend. Sometimes I think that the illness is easier on me than it is on my husband and brother, who feel like they should be able to make it better but can't.

I have been dragging my feet on this book because I'm worried I can't do it justice or that it will turn into a "poor sick guy" book. Hopefully I'll find a good balance of realism and romance.

Lexi said...

This is an interesting post, Kerry. Diabetes and thyroid problems run in my family, so I'm familiar with autoimmune disorders. I have a book in mind where the main character has been chronically ill all her life, but never diagnosed with "this" or "that." This was a timely post for me!

M.V.Freeman said...

My heart goes out to you--I totally understand this.

My youngest daughter has a Rheumatoid Arthritis, and sjorgens--auto immune diseases that require similar drugs to what you have had to take. Her road will be long.

My hat is off to you and all who suffer from illnesses you have to think about daily--because you do. It affects your decisions.

I think it takes great skill to write a chronic illness--I haven't attempted that yet, so I think its awesome that you are doing this.

Lisa Dunick said...

My husband has crohn's, so your remicaid picture brings back memories (of when that particular treatment was still working). I think sometimes authors layer in diseases/traumas to give their character life, which really never works. Because a character has to be fully living, breathing, and wanting before the urge to run to the bathroom hits. It's their essential character that determines the way they react to or deal with that disease--It's like John Green's The Fault in Our Stars. The kids in that book have cancer, and in many ways the PLOT is defined by it, but THEY are not defined by it. Still, the problems, challenges, fears, and trauma of the disease provide more than window dressing--they (often in heart-breaking detail) provide conflict.

Kerry Freeman said...

Thanks Lexi, M.V., and Lisa! I'm sending good health wishes to all your families.

Lisa, thanks for reminding me about The Fault in Our Stars. It's been on my TBR list forever. Maybe I should move it up and read it soon.

Cari Hislop said...

My dad has Crohn's disease. I think with a chronic illness, unless the person writing the story has first hand experience it's not going to sound real in a story. I don't have any real experience with it. My dad's suffering was in the background of my late teens and then I left home. Reading a story about someone suffering the disease probably would have made me more aware of what he was going through.

Kerry Freeman said...

Thanks Carl. I think an author can write realistically about a disease as long as they have some in-depth talks with someone who has it. I read things sometimes and wonder if the author talked to anyone at all or just looked it up on Wikipedia.

Larissa Lyons said...

Kerry - What a super and thoughtful post. Since I live with chronic pain & autoimmune stuff, most of my characters tend to have something physical they deal with (a blind heroine; a hero who was punished as a boy for stuttering who now, as a man, tries to avoid talking, etc.).

I haven't been as brave as you and tackled an autoimmune issue in a book yet, maybe perhaps bc my stories are historical, before most of these things had names (maybe bc I lack the guts???).

You are to be applauded, and I look forward to Charlie's story & journey. I'm sure a trusted CP or beta reader can provide feedback to help make sure you maintain the right balance of character, health, and story. Here's to not avoiding the word "toilet"!
:) Larissa

Diana Lee said...

One of my chronic illnesses is chronic migraine disease, and the best description of it I've found in a novel is in Ian McEwan's Atonement. He did a great job describing the isolation and debilitating symptoms without putting the character down or attributing her circumstances to mental illness, laziness, etc.