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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Book Review: The Directive

A while back I did an interview with author Rosa Fontana about her novel “The Directive” and her life with Crohn’s. You can read her fabulous responses here. But her book is so wonderful that I just have to do a proper review of it too. If her interview didn’t convince you that you HAVE to read this book, I hope this review will.

the directive by rosa fontana

I can’t think of a single thing I didn’t like about this book. And I can think of many specific things I loved about it. Somewhere in the very first chapter I had to stop for a moment to savor how much I was enjoying reading this. It reminded me why I love to read and I promised myself to read more from that moment on.

So what’s the story? At first, it’s just a glimpse into the life of a fairly normal girl. She’s extremely introverted, which of course resonated with me. And any spoonie will appreciate right from the onset the little details used to describe emotion. Being a book about Crohn’s, Lynne, our main character, feels a lot of her emotions with her gut. It’s a unique motif that’s easy to relate to whether you have a bowel disease or not.

Another thing I love about our protagonist is that she’s an English major, so she makes a lot of references to literature and poetry. I LOVE that. Lynne is such a real character, she feels like someone you’re sure you’ve met before. The other main character, Peter, is also very fleshed out and three-dimensional, but Peter is more like someone you wish you’d met. Everyone wants to be a Peter, and we’re all Lynnes. That’s perfect, because Lynne wants to be more like Peter too. He’s a lot like Peter Pan actually – a dream boy. Endlessly positive. Full of life.

She meets him at the hospital and he’s got Crohn’s as well. He’s been sick a long time and has gotten very good at it – if you’ve had a chronic illness for a while you’ll know what I mean. Lynne, on the other hand, is newly diagnosed and adjusting. These two states juxtaposed are so powerful when you’ve been in both places. And for anyone who has a life free of illness, this is a great look into the different “stages” of chronic illness.

This is an amazing tool to simply understand chronic illness, specifically Crohn’s. It is NEVER boring and never feels like a textbook – every bit of information has weight to it because you’re worried about Lynne. It never just throws facts and figures at you – you find them out in consequence. Life is on the line. You’re educated exactly as you would be if it was your own life on the line, and you were looking for answers. What a brilliant way to educate people. Fiction is a powerful tool. Unlike biographies and non-fiction I’ve read about people’s lives with illness, this is entertaining. If you write out every detail of your experience, however emotional it was for you, it won’t hook people and pull them in. It can – I believe biographies can read a lot like fiction – but it seldom does. Stopping to explain is the worst way to teach. People love stories. Make them feel. Make them WANT to know more because they have a stake in it. This book does that expertly.

Got a bit sidetracked there – CAN YOU TELL I LOVE THIS BOOK? So back to the story. Lynne ends up in the hospital and meets Peter. While doctors and nurses teach her how to manage her illness, Peter teaches her how to thrive with it. And in case you didn’t know, Crohn’s is actually a deadly disease. There are lots of life or death moments in this story. Lynne has to make harrowing choices that could literally kill her if she chooses wrong.

But wait! There’s more! Because chronic illness is never simple. Lynne must also make choices about her education, something dear to her heart that makes her feel like a functioning part of society. Despite doing her best, she ends up having to drop most of her classes. And then there’s her family life. Her parents are divorced and, being new to hospital life, aren’t the greatest support group. Especially seeing them next to Peter’s loving family, you can really feel Lynne’s frustration with them. They don’t understand her illness, they don’t know how to be there for her, and that’s something really real. You don’t quite want to hate them, but you’re close. You wish they would just know what Lynne needs! Why can’t they just — boy, this is hitting close to home!

BUT WAIT cause there’s a ton more that I can’t even write about because I don’t want to spoil anything for you. What I will say is that this book has got some twists – yes, twists plural. You feel like you kinda know what kind of book this is – she gets sick, she goes to the hospital, she learns warm fuzzy life lessons. BUT THEN— I can’t spoil it. I can’t. You just have to read it. The last few chapters are a trip. You’ll be like whoa….WHOA…..WHOOOOOOOOOAAAAAAAA WHAT IS HAPPENING OMGGGGGGGGG. Yes. Just like that.

GO READ IT. STOP READING THIS AND GO READ IT NOW.

CLICK HERE TO BUY IT ALREADY.

God’s Just Giving me More to Write About

First, I wanted to thank all of you for sending me the sweetest notes and well-wishes while I’ve been sick and trying to figure out why. I think there would have been a lot more crying fits if I didn’t have this great community to support and educate me. You’ll see what I mean once I start writing, but the invisible illness blogosphere has made these hard times a lot easier.

On Tuesday, I had an appointment at the student health and wellness center at UNT. I may have mentioned before in passing that I am not a fan of the health and wellness center, but with it being free for me and across the street from where I work, it was the only option for me to get medical help quickly. The last couple of times I went, I was told to just take mucinex. The first time that worked okay, but the second time I had pneumonia. It didn’t work out so good and I never forgave them for it. But, if you read my last post, you’ll see that I was kind of backed into a corner by my own health.

One of the things I dislike about the UNT doctor is that I can’t bring my husband with me. But, as any spoonie knows, having a doctor buddy is a valuable tool to not only help you describe your symptoms, but to help you remember what the doctor said later on. But this time, with some trepidation, he was let in with me. They explained that it’s okay because he’s my husband, but they usually never let boyfriends, etc in.

Once I got into the room, I was instantly at ease when I saw this on the wall:

what is endometriosis endo infograph

What are the odds?! Last time I was in, endometriosis wasn’t even listed in their system. Even though I was there for GI issues and not endo, I felt comforted, like I was just where I needed to be.

The doctor came in, and she talked and moved very fast, which I found a little distressing at first. She asked me rapid fire questions, and I kept feeling like I was getting them wrong. While she bustled about asking short, curt questions, she poked me and took my diagnostics. I began to feel like I was in a pit stop during a race. I was so worried that she would just recommend tums and send me on my way before I could even figure out what was happening. In a whirlwind, she’d gotten all the info she needed and sat down. She started writing and said “It sounds to me like you’ve got acid reflux. We’ll send you to our referral nurse and get you to a GI specialist right away.” I blinked. I was shocked. Quite a turnaround from my slow, arduous appointments with Dr. Rogoff.

She said that with GI problems, they never come to the party alone. I smiled and instantly had faith in her. This was a saying I saw all over the GI blogosphere. She gave me a ton of information and said to study it, and see if it sounded like me. She said she suspects I also have IBS. Reading through the information while I waited to see the referral nurse, my jaw hung open for a full 30 minutes. There were symptoms here I hadn’t mentioned at all, every single symptom fit me.

bert epiphany

She handed me a prescription slip and said “Here’s the prescriptions they would start you on, just to get the ball rolling.” She gave me Prilosec, another word I recognized from the blogosphere and knew a lot about. Ever since I took the first dose, it has been soooo much easer to eat food. She also gave me bentyl, which she said should help with the pain and will probably help with the endo, too. Those little blue pills are strong, though! I can take them 3 times a day, but I only take them at night. They make me so sleepy that I literally just stop functioning and fall asleep.

draco malfoy very potter musical faint

While I sat in the waiting room waiting for the referral nurse, I felt a little bewildered. I knew in my heart that IBS and acid reflux were exactly what the problem was. I knew that meant I’d have to change my diet (might as well say change my LIFE). I knew it was another incurable invisible illness. I thought of how much crying I did as I came to terms with endo and the life changes that entailed. I felt like I should cry now. Where was the despair? Where was the hopelessness?

the grinch listening gif

It never came. There wasn’t any room for it in my mind. Do you know why?

BECAUSE OF YOU!

I wasn’t thinking about my bad luck or the long journey ahead! The only thing I could think about was all the amazing bloggers who write about crohns and colitis and IBS. The only thing I could think about was all the girls I knew who taught me all about their condition – my condition. I know I don’t know everything, but I feel like I know everything. I feel like every one of your posts has armed me to the teeth, and I am ready for battle. Strong. I can live this way. I can thrive this way.

katniss everdeen hunger games three finger kiss

Don’t get me wrong – it’s not all rainbows and kittens over here. I haven’t even gotten to tell you what happened the next day… Oh yes. There’s more. But let’s try and just tackle one debilitating medical condition at a time (hey, if we can’t do that in real life, we can at least do it on the blog)!

And while we’re focusing on the bright side, I have a cautionary tale for you all. As I was researching pregnancy as a cure for endo, there was this sick and twisted little voice in the back of my head that said “but…what if you really do cure yourself of endo? What’s going to happen to the blog?”

And God said “No worries, you’ll have plenty to write about.”

Do YOU want to be armed to the teeth against chronic GI problems? Then check out these wonder women!

http://www.forwardisapace.com/

http://bottledtime.wordpress.com/

And check out the book The Directive by my friend Rosa Fontana, and be sure to read my interview with her here.

Rosa Fontana: Proper Use of the Semi-Colon

After I mentioned my rapper name “B.S.C.” in a post not too long ago, my long time friend Rosa Fontana posted this status:

“It’s 2:43 a.m. Best time as any to realize a good nickname for me would be Semi-Colon. Not that anyone would use it, though. Two syllables too many, I guess.”

Now, whether or not this is related to my post, I don’t know. But I believe it might be, as around the time I was first called “B.S.C.” I also gave Rosa the rapper name “Lil’ Intestine.” But when I read that status, I laughed for…probably about a week. It was ingenious beyond belief, I mean that’s real wit. Chronic illness meets literary pun – I love it. Rosa is, easily, the funniest person I know. She’s like a modern Oscar Wilde, if Oscar Wilde wrote facebook statuses instead of plays. And I don’t say that lightly! And not to be all Hipster about this, but I’ve been a big fan of Rosa’s writing waaaay before she published her first book.

Rosa’s novel, The Directive, “gives a face and personality to a disorder that is often misunderstood. It exposes the world of Crohn’s disease and its prognosis, treatments, and concerns through humor, science, and the deep insights of its youthful characters.” Rosa was kind enough to take some time to talk about her book, her disease, and her journey through life and words with the semicolon in this exclusive interview with Do I Look Sick.

So, you’ve written and published a novel. How did all that come about? How did you decide to write about illness?

A bit of history: I’d been planning to go to the College of Santa Fe in New Mexico for creative writing, but after getting sick and being diagnosed with Crohn’s during senior year of high school, this plan was nixed and I had to hurriedly apply to anyone who would take me that wasn’t too far from my doctor. The University of Texas at Dallas accepted me on short notice.

Sophomore year, a colleague of my creative writing professor gave a seminar and afterwards, asked if anyone would be interested in forming a writer’s group. The literary studies group at UTD is small. I think something like half the students in the degree field showed up to the initial group meeting.

I had two folders sitting on my desktop during that first meeting, one of which contained the blueprints for what would become The Directive. And the professor’s colleague, none other than the extraordinarily gifted author and former PI, Robert J. Sadler, sat down with me and said, “Okay, show me what you’ve got.”

Talk about nerve-wracking! But the most solid piece I had to show him, which would come to be included in the book, I read it and he gave me this mustached smile and said, “Good. Very good.”

How could I not write about Crohn’s? To say I’ve had some crazy experiences is a glorious understatement. You can’t make this stuff up. And thus, it’s perfect writing material.

What is your goal for this book? What do you want it to accomplish?

From the outset, I wanted the primary goal of this book to be a form of outreach and advocacy. I wanted other people with forms of IBD to read it and go, “Finally! Someone else has an awkward colonoscopy story! And ooh, steroids, they were the worst.” It’s that underlying experience that unites all sufferers of the condition. I want them to know we’re not alone, that we have each other. Beyond that, I hope it gives insight to those whom we patients know as “normal people,” comprised of caretakers and innocent/ignorant bystanders. They’re on the outside looking in. Many of us don’t want to voice these experiences aloud even though we so desperately want people to understand our disease. This book does that for us.

How did you get it published and up for sale? Do you have any advice for writers looking to do the same?

I spent the first two years after writing the book looking for a literary agent. Failing that, I remembered that we do, in fact, live in the 21st century and publishing a book really is as simple as going down to a local printer, uploading, and clicking print. There’s a great publishing company out there called Lulu, and I worked with them to get the book into a published book. Do I wish I’d had an editor and a formatter? Of course. At the time, I just didn’t have the financial ability to invest in either, but it made me work that much harder to make sure the final product was as close to perfect as I could get. The experience was the most rewarding part of the process.

For anyone out there looking to publish, a literary agent really is a good idea. The experts weren’t kidding. They’re the liaison between you and the publisher, and they’re on hand for middle-of-the-night editing crises, (though I don’t recommend calling them in the middle of the night). It’s not so much scoring an agent that matters, but the effort that you will be required to put into it that will make you prove to yourself just how badly you want your story to be a real book. If you truly want your novel to see the light of day, you’ll find a way to do it.

How long did it take to write? What challenges did you face as you wrote? Did being sick or having “bad days” affect how/when you wrote?

Math was never my forte. Hang on, lemme count on my fingers…nine months. The book was my baby. Nine months start to finish.

I was in remission at this point. I’d been in and out of the university a lot in the past year because of Crohn’s-related issues. To be in remission and capable of sticking with a project, the timing was perfect. The biggest challenge, I suppose, was finding a good time to write, a time that I could stick to where my brain would still be functioning but not distracted by school or work. Did that stop me from composing scenes in the margins of my notes? No. But it also meant that about 80% of that book was composed between the hours of one and four in the morning.

     As I said, being in remission during the time that this book was being in remission helped in ways I can only appreciate now, as someone experiencing the beginnings of a relapse but still writing. Being sick, without a doubt, impacts a person’s writing. If there isn’t a medication giving you brain fog and making you forget half the stuff you planned to write, there’s the fact that you’re clinging to a toilet for dear life and picking up a pen and paper is the last thing on your mind. It boils down to the moments in between, when things are quiet. The pressure is on to squeeze as many meaningful words onto paper in those rare moments as possible.

Do you plan to publish more books? If so, what do you want to write about?

Oh, definitely. Writing seems to be about the only thing I know how to do from start to finish, so I’m sticking to it! I currently have another project on the drawing board. Without giving too much away, I have found that writing about medical things is quite fun. I know there are about two dozen medical shows on TV right now, and you’d think they’d run out of stories, that a guy can only break his leg in so many ways, but the truth is, the possibilities are endless. Every person’s experience is different. The great thing about medicine + fiction means my crazy imagination can create some pretty wild things as long as everything makes sense on the page.

I will add, I love the heady topics, the storylines about life and death and all the questions we don’t have answers for. It leaves room for imagination and by extension, good stories.

Do you have any advice for writers in general on the process?

A little secret: Never stop writing.

Why do you write?

I was your quintessential nerd in school. Writing is my haven, my Iron Man suit, my quiet revenge, my no-judgments zone, my cone of silence. It allows me to be everything. There is so much freedom in it and it’s where I’m the most honest. Crohn’s has taught me that to make the most of my time; writing has helped me spend it wisely.

You graduated from college not too long ago. How did being ill affect your academic life? How did you balance illness, school, and work?

I distinctly remember my first college math class during freshman year. In the middle of an aggressive flare, I felt and looked like death. While the professor doodled equations on the board, I was in my seat waging a fierce internal battle: should I just leave? I’m gonna be sick. No, I should stay, it’s only day one. I need to be strong. If this is what college is going to be like, I’d sooner be dead. It was the lowest point in my life, initially. Then someone mentioned the disabilities office that was on campus. I went to see them and suddenly, the whole college experience was turned around. It’s okay to ask for help. It’s okay to tell your professors, “Hey, here’s a letter from my doc. Be forewarned, I’m gonna be sick.” And if they give you any crap, just remind them of the legal ramifications. Happily, for me, it never came to that. It became a lesson on balance. I found that health seems to put itself first and then dabble in every area of life. I worked with it instead of against it.

What was your major? Why did you choose it?

Thanks to an awesome college advisor, I wound up receiving two majors: literary studies and historical studies. (Don’t laugh, that’s UTD for you. Just round up and call ‘em lit and history.) I started off with literary studies because it was the closest I could get to creative writing without paying $28k a year at a private arts college. Writing fiction is easy. Writing good fiction, for me, started with being able to write good non-fiction: literary essays. By creating verbally blown up diagrams of any particular novel or poem, it allowed me to understand not just what makes a story enjoyable to read, but also how a story ticks, how it moves and affects the reader. The historical studies degree was just a happy accident.

What does a “bad day” look like for you? And how do you deal with it?

It depends on whether I’m in remission or a flare. A bad remission day is usually days-long fatigue that won’t be fixed by any amount of sleep. My appetite may be nonexistent, or I might be ravenous and consume everything in sight, maybe even store some for later like the squirrels in the front lawn. I spend most of the day in the bathroom. If I had a secretary, I’d ask them to hold my calls.

If I’m in a flare, however, it’s the last circle of hell, which even then hath no fury like this woman, who has so obviously been scorned. Everything I ingest goes flying through me. My guts absorb zero nutrients. Any water intake is used for projectile action. I spend all of my time in the bathroom. I lose blood via my guts. And then my doctor prescribes a drug that might’ve only just been approved by the FDA a month ago in the hopes that it’ll do something.

What’s your favorite comfort when you’re sick or just feeling down?

Tea. Always. Forever. The world could be ending; I don’t care, just as long as I have a decent cup of tea.

Other than writing, what do you like to do?

Let’s just say I liked archery long before Katniss made it cool. Other than that, I’ve always loved to draw. It helps to be able to visualize my stories, sometimes.

What are your plans for your future?

I think a lot of invisible illness sufferers, or really anyone with any sort of illness, understands me when I say I’m just planning to get through the next five minutes. For me, it’s the next five minutes plus a second book. Grad school sounds like an adventure. A boyfriend sounds nice, too.

We grew up in church together – how has your faith affected your view/experience of being sick?

It’s amazing how much one affects the other and vice versa. If anything, my entire worldview has evolved in the time since my diagnosis. I think Crohn’s disease has been the greatest blessing, and it takes a big part of me to say that. Has it made my life crappy? At times. But you know what, I’ve got a ridiculous pain threshold now, plus a book-worthy experience out of it. I don’t blame anyone or anything for it. It is what it is.

What do you feel is your greatest accomplishment?

Up until now, that book is the one thing that I feel has deserved and received every bit of my focus and energy and time. And it makes me so proud. If I died tomorrow, I wouldn’t regret anything, because of that book. I hope it reaches the hearts and minds of people like me and people utterly different from me.

Obviously, you don’t look sick. How DO you look? How do others see you, and how do you see yourself?

In the words of Fred Weasley, “A scrawny, specky git.” Ah, I don’t know. I’m sure I look a little on the malnourished side and my pants have a hard time staying up without a belt. I’m pretty average, and it’s probably why people don’t automatically assume I have a disease. After they find out though, I like to think that, in confidently explaining to them what Crohn’s is, they see me as someone enjoying everything she can in life. And that’s exactly what I do.

How Do I Put This…?

In our last blog post we invited our readers to share their awkward conversations about being sick. We got a lot of great responses, and in this post we’re going to show you the good, the bad, and the ugly.

First up: The Good! (or at least the not bad!)

This response comes from Maddi, a friend of mine from high school. She shares some great insight on what it’s like to be backed up by a program at school specifically for invisible illness, much like the one I discussed on one of my first posts. She does not have a blog herself, but she should. She does have very inspiring facebook statuses about dealing with illness. She shares some wisdom here:

“I too have Crhon’s Disease. Well, okay, let me just list off everything I have, since this is (what I feel like) a safe place. I have Crhon’s Disease along with Irratable Bowel Syndrom (so basically, the second I eat something bad, it bugs all the way through my digestive tract. Fun stuff), Artritis from Crohn’s, Endometriosis, Generalized Anxiety Disorder, and Depression (which, as anyone that is well versed with chronic illnesses knows, mental disorders and physical disorders typically can go hand in hand. I mean how can you NOT get derpesssed?)

Honestly, when it comes to employers, I don’t always tell them. I feel like it’s a need to know basis, and I don’t like to get treated differently. That being said, if my absences become frequent or it I have to go home sick, in the case of an employer, I generally will tell them I have a chronic illness. By law, they can’t ask you more than that. Maybe I’m overly cautious, but I definitely don’t want an employer to treat me differently because I’m chronically ill.

With Professors, however, it is a completely different story. I am fortunate to go to a school that has a disability policy. Through my disability adviser, i am given a University document that basically tells the professor these things: I need to have the ability to make up missed work, I have an absence accommodation (so I can’t fail a class at the maximum absences), I have preferential seating (near the door to go to the bathroom), I may leave class if I need to, and I have the ability to make up missed work without consequences. This is SUPER handy. However, if the professor is nice, I’ll generally tell them what I have when I begin to rack up absences.

I have had some professors who are not willing to work with me on this. In fact, this semester I took a class offered by the head of the English Department. The lady was all high and mighty and wasn’t willing to work with me on my participation grade, which was 10% of my grade, which doesn’t sound like much, but the class was insanely hard so I knew I needed that 10%. She managed to abide by all of the rules with what she was doing to me, and no one was willing to tell her what she was doing was wrong because she was the head of the department. I ended up having to drop the class because, honestly, at that point, I had completely lost my respect for her.

I hope my insight has helped someone out!”

Next up, we have THE BAD.

This story comes from Marnie, author of therevertedbutterfly.blogspot.com. She prefaces this story with a disclaimer: “This was years ago and a lot has changed.” While Marnie’s experience with endometriosis might be different than the modern treatment, the emotions and judgments have, unfortunately, not changed much.

“After having every surgery & procedure (including self injections into my stomach for 6 months) I had a complete hysterectomy. In passing as he was the local dr in our small town he said before I had the surgery (though he wasn’t my dr) that ‘you will fall in love this first semester of college & no man will marry you because you can’t have kids). I was strong enough to know to listen to my body. I had severe endometriosis & I knew something wasn’t right…Always trust what your body is telling you.”

You can read Marnie’s full post here.

And now… THE UGLY.

This story comes to us from Tosha at BottledTime, one of my very favorite blogs on dealing with invisible illness. Seriously, go read it. You won’t regret it! Tosha’s just about the sweetest person you could hope to meet, but today she shares with us the ugly side of being sick and not getting the help and compassion you need.

“I honestly cannot remember how many times I was asked if I was pregnant. My answer of, “No,” to this very repetitive comment was usually met with a, “Sure,” and “knowing look.” This experience happened with other students, professors, family, and what I feel was the most appalling, the campus nurse. I had gone to see her because I was urinating essentially (shy readers look away) straight blood. She asked if I was pregnant. When I gave her my “sample” and she refused to submit it because she said there was no way that that much blood was in my urine & I had contaminated the sample with vaginal bleeding. By the time I made it to a doctor outside of the school, and they tested my urine, they were shocked that I had not had it tested sooner and that I was not lying in a hospital bed at that very moment.

The other incident I’ll share happened with my employer. I was going through the murky depths of trying to get a correct diagnosis (most people with chronic illness take years to get properly diagnoses – partly because of experiences like the one I just mentioned). To put it mildly, things were not good. My supervisor, who encouraged us to have an open conversation with him, just wanted to know when it was going to be “fixed.” Let’s just say I didn’t feel open telling him that I had no idea (and later that it never would be). Instead I felt pressured to drop to part time so I wouldn’t cost the business as much money. And I learned a hard lesson about being open.

Unfortunately, this is all too common in the workplace. I actually just discovered the podcast Sick with Success which talks about the cost of chronic illness in the work place (which is unavoidable & more prevalent than is realized), how the air that’s created costs companies more money, and that there are better ways to utilize those with chronic illness to actually improve productivity & save companies money – starting with educating management & employees. Thought I’d share the link with you since it’s right on point with your topic: http://itunes.apple.com/ca/podcast/sick-with-success/id521131715

Sharing your illness with anyone, be it employers, friends, professors, or even doctors, requires a great leap of faith. We know going in to it that most people have no idea what it’s like to be sick and they have no idea what we need. Some people choose to keep it on the down low, or as Maddie put it “on a need to know basis.” Others (like myself) are too eager to share and not tactful enough. Still, as Tosha and Marnie show, even the most deft use of tact cannot deflect ignorant people (or people who are just plain jerks).

I leave you with one last story, shared by the amaaazing Rosa Fontanna, who does not have a blog but who wrote a wonderful novel that “exposes the world of Crohn’s disease and its prognosis, treatments, and concerns through humor, science, and the deep insights of its youthful characters.” You can read more about her novel, The Directive, here.

Rosa writes:

“I’ve had similar experiences and sympathize with ya! I have Crohn’s disease, and when it comes to discussing it with people, I find that more generalized opening statements traumatize newcomers less, though I can’t help those who’ve heard of the disease because, “Oh hey, my friend’s aunt had that or something,” jump to conclusions, and bellow, “OHMYGODDDD YOU MEAN YOU POOP ALL THE TIME?!”

It’s like, honestly, people? Guys, you should be more ashamed of your browser histories than of your bodily functions. Guess which one’s been around longer? And guess which one’s normal?

As a cashier at a grocery store, I am required to stand in one spot for eight hours a day, with two breaks and a lunch. I finally got around to telling my boss about it a few months after working there, because I’d started getting sicker. I’m very lucky because she was incredibly understanding, but I’m willing to give myself some credit here, too, because I didn’t lead with: “Well for starters, I have to poop a lot.” Instead, I helped her understand by saying, “Ever heard of lupus?”
*slow nod*
“Well, it’s a bit like that.”

Which caused her to prompt me for more information. It got her interested without scaring her away. Makes a big difference!

As for jerks, I’m happy to say I haven’t encountered any. I’m sure the day will come when someone will try to let their ignorance get to me, but honestly, the way I see it, they don’t know any better. I’m the smarter one in that particular situation and that suits me just fine.

I say, fight the stigma. Because really, everyone perpetuates it with ignorance. For those who don’t have an invisible illness, LISTEN. For those who do have an invisible illness, don’t pass off your disease as the flu or a tummy-ache because everyone else will be conditioned to assume that’s all the disease supposedly is. Finally, by all means, tell the truth about your respective illness and know that you’re not alone!”

I couldn’t have said it better myself.