Saturday, April 11, 2015

Disease: The New Sparkly Vampire of Hollywood

With recent media releases such as: The Fault in Our Stars, Me, Earl & The Dying girl, Chasing life, and Red Band Society, disease seems to have recently stormed the media spotlight. Suddenly illness is a Hollywood hot theme; in one fluid motion leaving vampires that sparkle, ridiculously attractive young werewolves, and supernatural romance in its wake. While many people would raise rejoice in such an occasion, arguing that it brings media attention to those battling medical conditions, the actual sufferers of serious illness are not so swayed. The media portrayal of disease is extremely limited, featuring almost exclusively Cancer.  

Cancer seems to be the only disease that producers have interest in. Why you ask? You can keep the features, the beauty, and the looks of an actress in tact. Cancer is in many cases (though not all) a disease that doesn't disfigure its patient’s body. It remains invisible, a war ragging inside that is unseen to the naked eye. You can portray this illness easily by shaving a head, or adding a medical apparatus. While the actors will never truly understand the heart-wrenching moments these brave patients must endure, producers can absolutely make them look the part. In the Hollywood world Cancer seems to be a disease that only afflicts devilishly handsome young men and women who all face their battle valiantly with sarcasm and humor. Their stories full of "cancer perks," getting away with shenanigans, and young, tragic romance. However, there is little about the actually health journey they are supposed to be battling. These journeys portrayed do not show the horrendous side effects of medications, the days spent in bed to weak to move, unending doctors appointments, and procedures, the loss of friendships, the debilitating mental suffering, or the internal struggle with self worth... but all media portrayals of Cancer do have definite endings, leaving at least one main character dead. Cancer is that type of beast, you treat it with everything you've got and if it works, you are cancer free, hoping for a low remission rate, or it kills you, and your story is over. Viewers like endings.
Think on this for a moment. If a Fault in Our Stars Two was created would you watch it? Before you jump to 'yes' because you loved the movie, know the plot. The plot would consist of Hazel after the devastating loss of her love and best friend, living everyday life as someone who is terminally ill. Probably a lot of Netflix binging, defeating doctor appointments, and worsening depression. Eventually her recurring episodes of fluid filled lungs would increase and she would become bed ridden in horrendous pain that no pain-killer could ever relieve. 
This would last for years before she finally suffocates and dies. 
Would you still want to see it?

No one likes a story that never ends. The viewer becomes agitated, bored, and even uninterested if the plot drags on to long; viewers want a cure, or a quick demise. Unfortunately that frame of mind doesn't just happen in the cinema world, but is an ongoing battle for patients fighting a plethora of different illness. When first diagnosed your support team is like a rock, a sturdy foundation. You have caught the attention of those around you and they are interested to watch your story unfold. Eventually after your 4th, 5th, 6th hospitalization, round of chemo, or surgery, the supporters, cards, and visits from old friends start to fade away.
The world is accustomed to short commitments. Your movie has a plot with no ending, it has gone on to long, and they begin to lose interest. One by one your sturdy foundation becomes shaky and uneven as your support system fades away.
This is exactly the reason why you never see a plot in the media centered around chronic illness; we do not have quick plot line.

You will probably never see Scleroderma, Lupus, Multiple Sclerosis, Mitochondrial Disease, Myasthenia Gravis, and so many others life-altering diseases portrayed in film. Why? These diseases are what you call chronic and degenerative, this means the patient will battle these conditions with no hope for a cure their entire life. Their story never ends. While yes, many of these conditions eventually lead to death; it can take up to 20 years depending on the severity of body systems and organs involved. They can be horribly disfiguring, debilitation, and often leave the sufferer looking like a husk of their former selves, sometimes even unrecognizable. Many are bound to oxygen tanks, feeding tubes, trachs, central lines, and other medical devices, spending a majority of their days in bed. 
Not exactly the best plot for a movie or television series.
Similar to these popular Cancer films we take large amounts of prescription medications, have weekly procedures, surgeries, and tests, attend support groups, struggle with severe pain, anxiety, and depression, mourn over the lose of our former life, and unfortunately must also watch as the friends we have made through similar circumstances die. Many of us actually go through aggressive chemotherapy as treatment for our disease. Not only cancer patients have to rock the bald-head.
Unlike these movie and TV portrayals of illness that have become so popular chronic illness sufferers receive no "cancer perks" as the cinema likes to call it. In our case all we receive are snide comments about how "you don't look sick", that we shouldn't be parking in the handicap spaces, that we are lazy, or that we would be healed if we only changed our diet and lifestyle... hell, we even get told "at least its not Cancer!"
The world knows what Cancer is; however, the majority of people have no idea what beholds a chronic disease sufferer because they have never been exposed to it. Chronic illness takes the lives of its patients slowly, leaving us to suffer drawn out death over a period of years as our body slowly deteriorates. When you are diagnosed you are literally told that these diseases not only have no cure, but many have no solid treatment plans. The best doctors can do is try to ease our suffering and prolong our lives. As I have said before, viewers like endings, not endless suffering. 

I too have indulged in these media portrayals, enjoying them immensely, and even recommended them to those who want a small glimpse into the life of someone suffering disease. As a patient also navigation a fatal illness I can find many similarities, and connect well with the characters struggles. I am in no way stating that these films or TV shows are negative, that they completely miss-portray illness, or that Cancer shouldn't be on the big screen. I am simply stating that they do not always depict illness in all its facets. Just because you see someone’s battle illustrated in a theater, doesn't mean it is accurate of every patients journey. 
Remember when you indulge in a story, whether it be about Cancer, or any disease, that those people in your life who actually face illness are not actors. We do not finish being sick when the director yells cut. We do not get to remove our oxygen cannulas at the end of the set to return home a happy, healthy individual. 


  1. Very annoying. I'm sorry you had to deal with someone unable to cope with a disease other than cancer.
    People seem to want a disease that you get then recover from or die. There's no middle ground.
    It's very difficult to live with a long term condition ( fibromyalgia) without losing friends, patience, having to constantly remind family that you can't do everything.
    What can we do - I choose to live my best life despite it and not to be defined by it.
    I am as happy as I can be and I try to be as well as I can be.
    Interesting post, I wish you well Linda x

  2. Dear Linda,
    Shame on you for downplaying what Chanel is trying to say! She is the one living with this terrible, ugly, chronic disease that will ultimately kill her! She is trying to say that diseases like hers and other ones will probably never see the light of day in Hollywood because society will not accept something that can not be sold to them wrapped up in a pretty bow. Shame on you for for bringing your ignorance to her blog!

  3. I read your article in The Mighty and loved it; and I think I love this even more. Your honesty is refreshing and frankly, a relief. I've been told "at least it is not cancer" before. This disease has nearly killed me and will debilitate me for the rest of my life. I don't know what goes through people's heads when they make such dickish remarks.

  4. I just reread your article on The Mighty again which led me here. Thank you, thank you, thank you for this. You articulated my feelings so well on why I so strongly disliked "The Fault on Our Stars." Hollywood, and even the world in general, likes to romanticize suffering. Even though we can cling to God's Sovereignty through it, there is nothing glamorous about our illnesses, and they are as real as anything else. Love and prayers to you, dear one. Thank you for advocating for us. ♡