Seeing Invisible Illness in Modern Storytelling

Illness is portrayed in many modern stories, and most often, the illness is invisible. This allows for the hero or heroine to remain beautiful – something our society values above all else. The one thing these ten stories have in common is that somewhere in the plot, there is sickness. Illness often appears as an antagonist inside the hero, and only rarely as something the hero must come to live with. Sometimes, the illness is not the hero’s, but it belongs to someone the hero loves. In this case, illness is the catalyst that drives the action. Sometimes it is the villain who is sick, and the illness drives the acts of evil in the story. In any case, the story is somehow about illness, life with illness, or overcoming illness. No matter how illness is used, there are positive and negative social implications.

The Pros

There are many pros to the ways illness is used in modern storytelling. Having illness figure prominently in the plots of films and TV shows has one over-arching positive impact, and that, of course, is awareness. The fact that people hear about these invisible conditions is a huge contribution to the world of someone with an illness. It is much easier to find support and acceptance when people can say “Oh, I’ve heard of that.” Storytelling shows us the trials and tribulations of living with illness. Some may rise to the occasion, like the heroes, and some may become corrupted by it, like the villains. Either way, storytelling offers insight into the world of someone struggling with illness.

The Cons

As great as awareness is, there is also a lot of bad coming from the way illness is currently portrayed in modern storytelling. Obviously, the fact that many villains are driven by some kind of illness does not really paint a pretty picture of those of us who carry the burden of illness. Generally, ill villains become evil by stopping at nothing to get their “cure.” But even the ill heroes and heroines have some cons to them. In these stories, is illness too glamorous? Too melodramatic? Usually it is, at best, unrealistic. At worst, it beautifies being sick until it ranks with hubris or some other trite trait. You know the saying “Some are born heroes. Others have heroism thrust upon them.” This is the way that heroic illness is often presented. What are the implications of equating fighting illness with heroism? Is this a realistic view? What are the problems here?

How To Be Sick

By including illness in the plot of these stories, the author does seem to imply some kind of advice on how one should be sick. In some cases, the author is sick, and in some cases not. Generally, though, an image is painted of how a sick person “should” be. The archetypes are not realistic, and perhaps even harmful to real people who are sick. There are basically three types of sick people in stories:

  • –  The Hospitalized Angel – usually a beautiful and innocent female character who is totally helpless.
  • –  The Tragically Ill Hero – the one who stands up to fight their illness, usually alone, and usually triumphant. Generally finds a cure.
  • –  The Desperate Villain – usually sympathetic and male. Will do anything to find a cure to his illness.

How to Be Well

Inversely, as these stories offer advice, both good and bad, on how to be sick, they also offer advice on how to be well. There is really only one person in a sick person’s life in movies, right? Their hero. Their champion. The person who rides out into the sunset, vowing to find a cure. Sure, when a Western hero does that for his little sister, we all cheer. But there is one thing about this that is very destructive. Say you are a healthy young man, and you have started dating this pretty girl. You like her a lot, and as the relationship gets more and more serious, you find out that she has an incurable, lifelong disease. Suddenly, you realize that the world will expect you to be her hero. Can you devote your life to that? Do you want to? How terrible must it feel to know that anyone you get involved with will have to take that place – the sick person’s champion? Wouldn’t you rather be a Tragically Ill Hero, and go off by yourself to find a cure?

What’s the main problem here? This entire scenario revolves around finding a cure. Rarely, if ever, does a couple in a story learn to live with illness.

Change It

I want people to look at these stories and, after weighing the pros and cons, and examining the stereotypes, decide what parts of the story are valuable, and think about what would need to change. Stories about illness should convey illness realistically, and offer help or comfort to those dealing with it. Some of these stories may not need changes. Others may only need a small tweak. Others still may need to be rewritten completely or altogether thrown out. I want to get people talking, get people writing, and get more stories out there about illness. I want stories that raise awareness and bring light and hope back into the lives of those who suffer.

The Stories

Repo! The Genetic Rock Opera

Synopsis: In a dystopian future, the human race almost died out from an epidemic of organ failure. After GeneCo., a company run by Rotti Largo and his three children, begins financing organ transplants, mankind is saved…but when the repossession of organs is legalized, Repo Men begin hunting their patrons down and brutally murdering them to re-attain the organs.

Nathan Wallace works for Rotti Largo as a Repo Man after the death of his wife, Marni. Rotti, who also loved her, has convinced Nathan that her death was his fault, and uses this to blackmail him into being a Repo Man. Nathan and Marni’s daughter, Shiloh, has the same grave illness her mother had, and has never left her own house. She lives a very sheltered life. She has no outward signs of illness except hair loss, which she hides by wearing a wig.

When Rotti finds out that he has a fatal disease, he decides it is time to collect and exact his ultimate revenge on Nathan for winning Marni. He lures Shiloh away from her home, promising a cure. Shiloh meets him at the Opera, where it is revealed to her that her father is a Repo Man and a murderer.

SPOILERS (skip to next title if you want to keep the ending a surprise)

Not only that, but he has also kept her sick when he could have cured her – he wanted to keep her locked away at home, sick, to protect her. Rotti hands Shiloh a gun and tells her to kill her treacherous father. She refuses, and Rotti kills him himself. As she holds her dying father in her arms, she assures him that all is forgiven, and leaves the theater with her head held high, vowing to find a cure and be the master of her own fate.

How To Train Your Dragon

In a Viking world where dragons fly, a village lives in constant fear of the onslaught of attacks from wild dragons. Children are raised to hunt and kill dragons to protect the village. As a rite of passage, each child must fight and kill a dragon to be considered an adult.

One outcast boy, Hiccup, finds a rare type of dragon sleeping in the woods. Seeing this as his only chance to kill a dragon, he attempts to kill it. He finds, however, that he does not want to. He observes the dragon from afar, and realizes after a few days that the reason it is stuck in the forest is that it’s tail is injured and it cannot properly fly.

Hiccup begins to befriend the dragon, gaining its trust. He starts trying to train him, and at the same time, he works on designing a kind of fan to attach to his tail so that he may fly again. When the Village decides to send a crew to the Dragon’s island, Hiccup shows the youth of the village how to train dragons, and together they help save the dragons’ home.

SPOILERS

In the climactic battle, Hiccup is grievously injured. He ends up losing part of his leg and must build himself a mechanism to walk again. He and his dragon are rehabilitated together, both of them learning to live with prosthetic help.

The Amazing Spider Man

Peter Parker begins snooping for clues about his parents’ mysterious disappearance when he was a child. His hunt leads him to a scientist who his parents worked with – Dr. Connors. Dr. Connors has only one arm, and is working on a serum to help humans heal themselves the way lizards do. He tests the formula on himself, and mutates into a giant lizard-man who terrorizes the city.

Meanwhile, Peter is experiencing new mutations of his own, as he develops spider powers from a spider bite he got at the lab. He rises to fight off the deranged lizard doctor, and bring peace to the city.

Final Fantasy VII: Advent Children

Cloud Strife, an ex-mercenary, has been living in isolation after he came down with the geostigma disease. The geostigma is an epidemic that has been raging all over the world. When all the children with geostigma in town start disappearing, he reconnects with his old friends and comes out of self-imposed isolation to try and find them.

SPOILERS

Three mysterious men have kidnapped them and begun to brainwash them. In a clash of swords, magic, and muscle, Cloud and his friends fight them off and save the children. A cure is found, and Cloud and the children bath in a magical pool and are cured.

“Peggy’s Turtle Song” (King of the Hill)

Bobby Hill is diagnosed with ADD and put on Ritalin. (you can read my detailed analysis here)

“Junkie Business” (King of the Hill)

Hank Hill hires a new part time employee at Strickland Propane. When he finds out the man is addicted to drugs, he tries to fire him. The man finds a loophole in the law and enrolls in a rehab. Under the Americans with Disabilities Act, Hank can no longer fire him and, in fact, must actually make ridiculous accommodations for him. In response, the other employees self-diagnose their own disabilities and demand accommodation.

“Hank’s Unmentionable Problem” (King of the Hill)

Hank Hill begins having problems with constipation, and is extremely embarrassed about it. Out of concern, his wife Peggy talks about it with everyone. Hank and his family must bond together to overcome the medical problem, no matter how embarrassing it might be. (check out my video review of this here)

The Secret Garden

After loosing her parents in a tragic epidemic in India, Mary Lennox comes to live with her uncle. She discovers a house full of secrets, a very sick cousin of hers, and a garden that’s been locked up forever. Through curiosity and bravery, Mary opens the garden, frees her Uncle from his depression, and helps her sick cousin Colin to get well and walk again.

The Secret of NIMH

When her son falls sick, Mrs. Brisby must venture forth from their small home and unlock the secrets of her husband’s life and death to save her son’s life.

The Directive

When Lynne, an introverted college student who loves books and reading, is diagnosed with Crohn’s disease, her whole life is turned upside down. As she navigates the turbulent new world of hospitals and doctors, she realizes that she must come out of her shell and change herself and her life if she is to now live with Crohn’s. (check out my review of this amazing book here and read my interview with the author here)

Summary

It was actually quite challenging to find illness portrayed in modern stories, and as you may have noticed, I did end up including one story that is not exactly modern – the Secret Garden. I felt, however, that its inclusion was valid, as this book is considered by most to be a “classic” and is still widely read today.

I had a really great time putting all this together. I keep a running list of movies and books I come across that pertain to life with illness, though I was only able to used a few from that list for this particular project. Many of the stories were allegories for illness, and those would simply not work in this setting. Perhaps one day it would be fun to put together a sister collection to this one that is mainly allegories. But for now, I focused on stories that actually featured illness as a big factor in the plot.

I would have liked it if illness was the main driving factor in each plot, but I feel that a collection like that would feature only one type of story – the Tragically Ill Hero story – and it was very important to me to show a variety of ways that illness can be used. Some of the examples are wonderful and realistic, and others are stereotyped and beautified. I am glad I was able to find a good mix, because I think that people in general have mixed up feelings about illness.

(NOTE: I wrote this as a part of my final for my storytelling class back in 2012. What are some good newer stories dealing with illness? Leave your ideas in the comments below!)

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DoILookSick Online Caricature Event!!! Sign Up Now!

Health isn’t just skin-deep, and many of us don’t look as sick as we feel. But on the flipside, being chronically ill can have a very negative effect on our self-image. When we look in the mirror, we often see someone who is tired, a failure, lazy, too skinny or too fat, not strong enough, or any other innumerable examples of negative self-talk.

One remedy to these feelings is to see yourself through someone else’s eyes. That can be easier said than done. One whimsical way to do this is through drawings. Check out this video from Dove where a police sketch artist draws each woman twice – one based on her description of herself, and one based off a description given by someone they just met.

I love this idea. And I love having drawings done of myself! I think it’s so interesting to see how someone else sees me.

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So this idea has been rolling around in my head for some time now. I’m hosting an online portrait/caricature drawing event! You do NOT need to have an invisible illness to participate! The whole point of “Do I Look Sick” is that looks alone can’t tell you what’s going on inside a person, so we need participation of well and sick alike.

Since September is Chronic Pain Awareness Month, let’s get a good visual of people from all backgrounds and age groups and show that you can’t tell by looking who is dealing with chronic pain.

GROUP PORTRAIT – FREE

Anyone and everyone can sign up to be a part of the group portrait! It’s completely free! All I need is for you to send a picture of yourself to diehardguardgirl@yahoo.com with the subject line “GROUP PORTRAIT.” It will be in a similar style to this one I did of me and my coworkers a while back:

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SOLO PORTRAIT – $2.00

This will be the exact same drawing from the group portrait, but singled out so you have a nice little doodle of yourself. Send $2.00 via paypal as a gift (“to friends and family”) to diehardguardgirl@yahoo.com and write SOLO PORTRAIT in the note. Email me your photo and you’ll automatically also be included in the group portrait!

SUPER YOU – $5.00

A while back I did an entire blog post where I illustrated some of my favorite bloggers using their blog title to design them as a super hero. If you would like me to do this for your blog, just send $5 as a gift (“to friends and family”) via paypal to diehardguardgirl@yahoo.com and in the notes include a URL to your blog. You’ll also be included in the group portrait! Don’t have a blog? You can still be a superhero! Just tell me what powers you want or what you want your name to be and I’ll take it from there.

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MY BEST EFFORT – $10

For $10 (gift “to friends or family”) via paypal to diehardguardgirl@yahoo.com I will sit down and do my best portrait attempt for you. Write “MY BEST EFFORT” in the notes and email me your picture and I will include you in the doodle-y group portrait but I will also do a “real” portrait of just you in my style using all my patience and great effort. I don’t have any kind of recent examples of portraits I’ve done, so here’s a random drawing I did of Maleficent with some eyeball problems:

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Disclaimer: I’m not a real artist and I’m kind of a weirdo BUT I promise I will draw you with the correct amount of eyeballs in the proper places. You’ll also be included in the group portrait!

BIG SPENDER REAL LIFE PORTRAIT – $20

There are no example pictures here because it’s pretty rare that I get out real paper and pencils and paint and like, make an actual physical picture. But if you send $20 as a gift via paypal to diehardguardgirl@yahoo.com, we’ll test my artistic prowess together. Email me your photo and mailing address and I will send my original painting to you. You will of course be included in the group portrait as well!

Commissioning artwork of yourself is fun and promotes good self-image and self-talk. I’m excited to see how this portrait of all of us together comes out. I think it’ll be a really cool keepsake commemorating our community here.

The sign up period will END on September 18th – that gives you 10 days to sign up and spread the word so that our group portrait is full of awesome people! The group portrait will be posted by the end of September (which is chronic pain awareness month – don’t forget!). After September 18th I’ll let you know when the other commissioned portraits will be done depending on how many people sign up for them.

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Happy Pain Awareness Month! And remember – love yourself!

The WEGO Health Awards Nominations are now OPEN!

It’s that time of the year again!

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Nominations have officially opened for the Fifth Annual WEGO Health Activist Awards. Time to celebrate the men and women who have empowered patients, supported your community and inspired you throughout your health journey.

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Past Winners – See Any Familiar Faces? 🙂

WEGO Health is an online network comprised of +100k Health Activists. They have created the awards program to recognize the individuals who are making a difference in the online health community.

Nominations Are Now OPEN (1)

There are 14 award categories, so don’t be shy- go ahead and start nominating your favorite bloggers, Tweeters, Facebook posters! I of course ask for you support, but I hope you nominate all your favorite health activists. There’s no cap on the number of people you can nominate! The whole online health community deserves to be celebrated!

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So head on over to the nomination page today, it takes just one minute!

Madeline and Childlike Pride Amid Illness

In an old house in Paris that’s covered with vines

lived twelve little girls in two straight lines.

Madeline

When I think of Madeline,  I think of my sister. All three of us loved the Madeline books, cartoons, and dolls, but most of our Madeline books and dolls belonged officially to my middle sister. I was 7 years old during her Madeline phase. She was 5. And she also happened to be in the hospital. She had a brain tumor, two surgeries, and spent over a year in the children’s hospital. She’s now a happy, healthy adult.

Being that I was 7, my memories of that time are trivial, and as I’ve grown older, I’ve gained more and more insight into the gravity of the things that happened then. Being diagnosed with a chronic pain condition as an adult has also given some of those memories new meaning – like Madeline. Because now I feel more deeply connected to Madeline, and I wonder if the people giving my sister Madeline dolls and books did so with these same thoughts in mind.

Madeline is, on the surface, a series of stories about an impish girl who, as the stand-out scrappy runt of an orphanage run by a fretting nun, gets into heartwarming shinanigans in gay old Paris. But there’s a bit more there.

The Madeline book that I remember most vividly and that, I believe, is the most famous, is one in which Madeline has appendicitis. Miss Clavel, the nun, wakes in the night because “something is not right” and instead of finding Madeline making her usual trouble she finds her in bed with a burning fever. Madeline is rushed to the ER and undergoes emergency surgery.

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Everything turns out alright. And Madeline is thrilled by the whole thing. The iconic moment from that story is when she proudly shows off her scar.

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And that stuck with me because that’s exactly what my experience with my sister was. Her room was full of the most wonderful toys and snacks and very interesting hospital things, and across her head was a scar, just like a headband would be across her head. I honestly don’t know how she felt about it– if she was self-conscious or if perhaps Madeline helped her feel proud of it. I thought it was cool. I didn’t have very interesting thoughts. I was told repeatedly not to touch it so I spent most of my time thinking about touching it.

Sister of the year right here.

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Anyway.

So that’s probably why Madeline books are a good present for kids in the hospital. I don’t know. But what’s really interesting to me now is the Madeline dolls my sister had.

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Pretty run-of-the-mill dolls. Some stood on the shelf, others were floppy rag-dolls for cuddling. But they all had something in common.

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You could be sure that whether she was a doll, in a book, or on the screen, she had her scar. Why? Because it’s a part of her character. You can’t have Madeline without her scar. You can’t have Madeline without her story.

And dolls get such a bad rep for promoting unrealistic standards of beauty. And now we have these companies working hard to make more “realistic” dolls to teach better values. But twenty-odd years ago, Madeline was waaaay ahead of you.

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Every time we saw a Madeline doll, we pulled up her dress to point out her scar. Was that an intentional outcome that the adults in our lives hoped for when they gave us Madeline? Maybe. Probably. I don’t know.

But now I’m all grown up, and I’ve got three scars on my tummy. And sometimes when I look at them, I think of Madeline.

When we’re kids and we get hurt or sick, we’re so freaking excited to tell people about it. We show off our band-aids, we tell the exciting story, we make you sign our cast, we brag about getting shots or taking medicine. Why? Probably because grown-ups are constantly praising us through any medical adventure. The doctor gives you stickers and lollipops for a reason. Your parents coo to you that you’re so brave and so good. A team of doctors and nurses work tirelessly over you while your main job is to sit still, and you’re the one who gets told “good job!”

Illness is universal. Everyone winds up on a medical adventure at some point. But the older you get, the more autonomous you want to be. Illness is like crying: it’s private. But humans evolved to cry when they need help, and keeping it behind closed doors is completely counter-intuitive. Same with illness. Illness should be something people come together over. You need praise and encouragement and pride to get through it.

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I should be wearing my bikini and pointing at my stomach proudly, saying “look at me! Look what I did! I was very brave and good! You’ll never believe what happened!” When you’re drugged up at the hospital, you get that child-like pride back. You never really see shy drugged-up people do you? Without inhibitions, most people recovering from a severe injury or illness act like it’s an exciting story to share. And it is!

Why do you think Madeline is so popular?

If, for any reason, there’s ever dolls made of me, I hope they all have scars. Madeline is doing a lot of good out there. I never felt like dolls were shaping my view of beauty and self worth… but 7-year-old me would be quick to tell you that her Madeline doll has a scar, and it’s really really cool.

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And that had to be good for my sister.

And it has to be good for me now.

Thanks Madeline.

Warning: Low HP

Today I’m sharing a short story I wrote back in college, using video games as a metaphor for life with invisible illness. Sort of my own “spoon theory.” Let me know what you think in the comments!

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I’m playing on expert and no one else is. How isolating.

I suppose it’s normal for the hero of the story to not fit in, but like most heroes, I don’t feel like I am one. I’m so different from everyone else, and not in good ways. I’m self-conscious and unsure, though no one else seems to see me that way. I don’t think I’m strong, though everyone says I am strong. I guess I’m one of those protagonists that people love to hate – the emo kind who are always too pensive and whiney. People yell “JUST PICK UP YOUR GIANT SWORD AND GET ON WITH IT!” Do you know how heavy that thing is? Especially when you’re playing on expert.

I can’t relate to anyone in this town. These people go about all day doing the same things day in and day out. The A.I. is horrible here – more than once I’ve seen the townsfolk just walking into a wall for hours on end, never getting anywhere. They always seem to be having the same conversations, and they never notice anything. For instance – my health bar is blaring, the alarm is so loud I can’t even hear the birds. I’m walking around on the brink of death but no one seems to notice or care.

What’s worse, though, is that they don’t seem to have love. No one is in love here. The bawdy barflies at the taverns do not love. The wenches who smoke outside seem even more love-forsaken. Am I the only one following some higher quest? Am I the only one with real intelligence, real feelings, real problems, and a real life? Because of course, I am in love. What hero isn’t? I’m going to save the world too, probably. That’s what heroes do – everything.

Everything alone. There’s no one I could possibly relate to, not even my love. No one else knows what it’s like to be the hero. No one knows what it’s like to fight all day, every day. No one knows what it’s like to have real thoughts. No one knows what it’s like to only have 2 HP left, and alarms blaring, while you try not to accidentally bump up against anything because it would probably kill you.

Sometimes I look at these other people and think how lovely it must be to be them. To not have a single thought in your head except for one that just loops and loops all day without ceasing. To be walking around in one circle for your entire life, and having each round be new and exciting somehow. Nothing rests on their shoulders. Nothing takes their HP. What a beautiful life.

I missed out on that kind of life. I made choices that marked me as different from the rest of the world. But these were choices. I did not choose to play on expert – some higher power did that. That is the part that seems unfair. That is the part that makes me pensive.

I started this game with a handicap – my HP goes down at a steady rate constantly. Battling and questing don’t help. I’ve become addicted to potions, elixirs, healing spells, and phoenix downs. These things have wrought my body with more disability, more dependency, and more need for cures and white magic to fix the status ailments I brought on myself by fighting death away. It seems the more “victories” I achieve, the more quests are added to my list. Does anyone else in this wretched town live this way?

No.

So I journey on, the hero of the story who feels they are not a hero. I am no knight, no solider, no master of anything. I am not strong or beautiful or chosen.

My HP alarms are blaring. It is always time for more medicine. I’m playing on expert but I don’t think I can win. But if this were Final Fantasy or Ultima, what difference would it make? I would much rather play those games on expert any day. But this isn’t a game – it’s real life.

It’s about time I did something about this HP warning. Two pills and a potion later, they’ve stopped, and I have four hours before they start up again – if I’m careful. So what will I do now? Go to work? Class? Run errands? I fight through another day that’s a battle to me, but just another day to everyone else around here. It would be easier if there were something that denoted expert mode – something visible, I mean. But I guess that’s why they call it “invisible illness.” It just comes with the territory. If I needed a wheelchair, or a cane, or I was missing a leg or something, things would be so much easier. I’ve tried to tell people, but with nothing to see, few people understand.

It doesn’t seem like too much of a stretch, though, for people to realize the bigger the sword, the bigger the monsters it’s meant to fight. And, of course, it’s heavy. Really heavy.

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