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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My Birth Story: Insert Labor Day Pun Here

So yesterday was my due date, but I already have a bouncing baby boy who is over 3 weeks old!

Since I shared my first birth story here, I wanted to share this one as well. Did I really write a FOUR POST series the first time around? Geeze. (See here, here, here, and here)

This will just be the one post. Spoiler alert: this time around went MUCH quicker.

So rewind to September 3rd, the day before labor day and the day of my baby shower. We cut it close, to say the least.

It had been an eventful weekend, as we’d also just moved into a new house. After spending the day at my parents house, we came home to box land to go to bed on a mattress on the floor. Junior was having trouble sleeping in our new house, so dada was showing him cat videos on his phone while I showered. And in the shower, I started having contractions. Not the usual ones, either, these ones hurt. In fact, I thought to myself about how water was called “the midwife’s epidural” and how that must be some crap because I wasn’t even in labor and the water was doing nothing for me (ha. ha. I never think I’m in labor when I’m in labor).

I got out of the shower and immediately started timing the contractions. Right off the bat they were 30 seconds long and two minutes apart.  I was miserable. I wanted to call the doctor right then, but again, I thought there was no way this was labor. I’d give it an hour to stop. Well, that was one of the longest hours of my life, and by the end of it the contractions were still consistent and I was beginning to think this was indeed labor.

So it happened that the moment my husband laid our son down to sleep, I opened the door and told him sorry, but we gotta go.

He insisted on packing a bag and even had the audacity to ask if I wanted to put some pants on. NO. NO I DID NOT. DAMN IT.

We arrived at the hospital just after midnight. It was officially Labor Day.

Exactly like last time, I didn’t think I had hit transition yet. This time, however, every nurse I encountered tried to tell me I was. But I’d only been in labor for an hour and a half, and it seemed like there was a long road ahead. Spoiler alert: there wasn’t.

I demanded an epidural PRONTO. I thought I’d get in a nap and be refreshed and ready when time to push rolled around. But while they set the epidural, my water broke and the nurse said call the doctor, it’s time to push.

All the while I’m still quite certain we have a ways to go. When I arrived, I was only at 4 centimeters! It had only been 30 minutes! Well bam, they measured again and in half an hour I’d gone from 4 to 10. No wonder I was in so much pain! Dang!

So I was totally bewildered. At this point we were just waiting on the doctor. It was pretty easy to resist the urge to push thanks to the epidural, but I also had a cold, and I could not resist the urge to cough. Every time I did, the whole room jumped. “WHOA, whoa, eeeasy!” One nurse said he didn’t know what would happen if I sneezed.

My doctor wasn’t on call (of course). When the on call doctor arrived, lo and behold, it was the same doctor who had delivered Junior! I guess they have her working all the holidays.

I pushed for one contraction. Everyone exchanged looks and the nurse said “ok, we might need you to do a half-push next time. Just listen really carefully, we might ask.” and I’m like “ok…I don’t know how to do a half push…” and one of the guys shook his head and smiled. “She’s going to have this baby without pushing.”

And I don’t even know what to tell you. At 3:08 am on Labor Day morning, my baby just arrived of his own accord. Most of my laboring was in my coughing, which sounds like I’m kidding but it’s true. I looked down and saw a baby. He wasn’t crying because this labor wasn’t weird enough already. The cord was wrapped twice around his neck, but it was very loose. The NICU people looked him over, suctioned him, weighed him, still no crying. He didn’t even cry when he got his vitamin K shot. I just kept asking “is something wrong? Is he ok? Why isn’t he crying?” the doctors just said they’d checked him over, he was healthy, seems happy… he must just be a very chill baby.

I guess so. He’s healthy as a baby horse. He just didn’t cry for the first 24 hours of his life. I guess because he didn’t feel like it. Or he enjoyed freaking me out.

So TA DA. That’s the end of the story. I just had a baby all of a sudden. Obviously, very different from my first son. He had a special yellow hat at the hospital to signify that he was late preterm, so that nurses would know to watch him extra close. He was tiny to us – 7 lbs 4 oz. But whenever we marvel out loud about how small he is, everyone is quick to say “he’s actually kinda regular size, even big for a preterm baby.”

We always joked with Junior that we “never had a newborn.” He was so big and strong. He was chubby, had hair, he didn’t look like a newborn or flop around. This time, we had a newborn. A preterm newborn even! Honestly it really scares me sometimes how small he is. He doesn’t have a lot of baby fat (he’s got a lot of baby fur though!) and you can feel how small and fragile his little bones are. For the first week of his life, we were at the doctor every day to monitor his weight gain. He had a lip tie and a tongue tie, breastfeeding got off to a really rocky start, and he was slightly jaundiced so he was a hard sleeper. So hard that it was often difficult to get him to eat, he was just so sleepy!

But we had his tongue and lip ties corrected early on. He got better at eating, his jaundice went away, and he passed his birth weight. He really is quite strong – he was lifting his head from day one! Sometimes I think he could roll over if he really put his mind to it. And I knew when he was still in the womb what a strong kicker he is – he used to wake me up with it! But to me, he still seems really, really, REALLY small. I love it as much as it worries me.

So that’s the story of Finny, named for the character in A Separate Peace. He already seems as precocious, innocent, and spontaneous as his namesake.

I’ll try to write more soon. As of now, I’m very sleep deprived, I’m still unpacking and getting settled in our new house, and I’m already feeling some endometriosis and IBS and anxiety things sneaking up on me. This is easily the craziest time of my life so far, and my husband said it’s honestly a good bet that this will be the craziest time of our lives ever – having a toddler and a newborn, moving, and did I mention my husband just switched careers too?

Yeah spacing that stuff out would have been good. But! Here we are. So if you don’t hear from me for a bit, you know why. But the blog is not done.

Sometimes People Suck

I love participating in WEGO Health’s twitter chats (follow @wegohealth on twitter to check it out). And each time, no matter what the topic that week is, the subject of losing friends seems to always come up. Chronic illness, whether physical or mental, tends to encroach on our social lives and that can bring out the worst in people. We don’t want to cancel plans or spend all of our time talking about our illness, but when we do, it would be nice to be met with understanding. Unfortunately, it can often break a friendship or even a romantic relationship.

Sometimes one too many cancellations causes a friend to give up on hanging out with you. Sometimes one too many suggestions to “think positively” or “try yoga” or “maybe if you just…” causes you to hit the unfriend button. Sometimes, after an awkward encounter with your illness, a friend or loved one “ghosts” you, falling off the face of the earth. Maybe they can’t deal with facing the idea of mortality when they see an incurable illness. Maybe their desire to “fix” you has made you feel unloved or unvalued, because as much as our illnesses don’t define us, they’re still a part of us. Maybe it was simply more baggage than they signed up for when they decided to be your friend/significant other.

It’s harsh. But it’s also true. Sometimes, people just suck.

A while back, I wrote a post on the story of Job, specifically looking at misguided attempts at “comforting” friends in hard times. Job is a bible story I think many people with chronic illness can relate to, and there’s verses that apply to losing friends as well.

Check out these excerpts from Job 19:

“He has alienated my family from me;

my acquaintances are completely estranged from me.

My relatives have gone away;

my closest friends have forgotten me…”

“My breath is offensive to my wife;

I am loathsome to my own family…”

“All my intimate friends detest me;

those I love have turned against me.”

When we go through something really tough, like an illness, sometimes it feels like everyone abandons you right at the moment you need them the most. Loved ones may be visibly drained by your experience, making you feel like a burden. When you stay home ill, it’s easy to feel forgotten. Illness is alienating. Healthy friends don’t know how you feel, and maybe you don’t know how they feel, either.

A more modern quotation that captures this can be found in the song “People Just Ain’t No Good” by Nick Cave.

“It ain’t that in their hearts they’re bad.
They can comfort you, some even try.
They nurse you when you’re ill of health.
They bury you when you go and die.

It ain’t that in their hearts they’re bad.
They’d stick by you if they could.
Aw but that’s just bull, baby.
People just ain’t no good.”

***

I know that it’s not everyone. I often say that, especially when it comes to dating, illness can be a good thing because it weeds out the insincere. At the end of the day, you’re left with people of heartier stock. True friends, true love. But when you care about the ones you lose, you don’t want to hear that.
Sometimes, people just suck.
Listen to some moody music, wallow in it, get mad, get sad, but then remember the true ones. Find them, because they’re out there.
But if you’re reading an article called People Suck, you’re not here for that, so yeah, people do suck. Most people.
But you don’t suck.

Official Enviroklenz Affiliate! MCS-approved Cleaning Products

Hey guys! I’ve talked before about how much I love Enviroklenz, and I’m still using their laundry products and air filters every day. You can read my thoughts in-depth by clicking here.

If you’re interested in getting some of these environmental protection products for yourself, and supporting this blog at the same time, I now have a handy button at the bottom of every page on this site! When you order using that button, I get a little commission and every little bit helps me keep this blog up for you guys. Plus you get some great, safe cleaning products for yourself. Using stuff like this helps lighten the day to day chemical load you put on your body, which lowers your chances of MCS and other chemical reactions and helps keep you healthy.

I’m also going to put a couple of big banners in this post since we’re here and they’re cool.

air purifier for allergies

Ya need to clean anyway right? Plus, you know that I wouldn’t put a permanent button on this website for any product I didn’t believe in and use myself. I’m not going to sell out on you guys – this button is really here for you. I hate shopping for cleaning stuff. I read the labels to try and be informed and usually can’t find a single thing with little to no harmful chemicals and fragrances. I don’t have MCS or eczema (if you do then you probably already use things like these) but I’ve always been sensitive to fragrances products, especially laundry stuff. So yes, I really am using this and it really has helped me.

I promise to stop talking your ear off about it now! Just know that handy button will always be down there just for you the next time you need cleaners or air purifier stuff.

Love you all! And OF COURSE don’t forget to make a rage comic and enter the #spoonieragecomiccontest! It’s free and there’s prizes! Go go go!

Invisible Illness Rage Comic Contest!!!

You don’t see rage comics around as much these days, and that makes me sad. I love a good rage comic.

What’s a rage comic, you ask?

It’s a comic strip made from a series of pre-drawn expressions of various emotions– oh nevermind. I’ll just show you!

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So yes. These little characters can be strung together with doodles to convey little weird slices of life. So I thought WE NEED INVISIBLE ILLNESS RAGE COMICS.

SO LET’S HAVE A CONTEST!!!

You can make your very own rage comics by clicking here!

There’s only one rule: your comic must be about living with invisible/chronic illness.

You can submit as many times as you like!

Just make your comic, save it, and post it on instagram or twitter using the hashtag #SpoonieRageComicContest by March 20th! You have ONE MONTH! Use it well!

What will you win? Your pick of any item from the Official DoILookSick Store!

So hop to it!

Here’s my chronic illness rage comic for inspiration:

rage comic chronic illness cyst medicine doctor

I can’t wait to see what you guys come up with!