Requesting representation in fiction focuses on visible marginalized groups in many ways, yet today, I’m going to plead the case for fictional characters with chronic illness. Invisible illnesses exist ostracizing a large segment of our population who seek not only acknowledgment but empathy.
The problem with most chronic illnesses is that they’re not dramatic. They’re often characterized by unseen struggles or undiagnosed symptoms. Over the last few years, many underrepresented groups have requested more visibility in our culture. Women, people of color, the LGBT+ community, mental health advocates, differently abled people, and neurodiversity advocates, among others, have been demanding better media portrayals. While society has been slow to respond, it has begun to answer the call for these diverse representations, as well it should.
Unfortunately, many suffering from chronic illness lack the energy to demand, seek, or request. Invisible illnesses disempower many of them. Simple daily tasks burden them, making any additional actions unfeasible.
Yet, as much as any other group, individuals living with chronic illness need representation so that people don’t pity them or assume laziness from them but empathize to aid them.
What Is a Chronic Illness?
Chronic illnesses come in many forms. Multiple sclerosis (MS), fibromyalgia (“fibro”), lupus, Crohn’s disease, chronic fatigue syndrome, irritable bowel syndrome, colitis, thyroiditis, and Hashimoto’s Syndrome are all examples of chronic illnesses.
The definition of chronic illness, however, is far more illusory. An article from 2016 notes that the medical and academic communities still have no precise definition. Everything from heart disease to cancer remission falls into this overwhelming category since “chronic illness” means any symptom lasting for a long time that can’t really be cured.
What Do We Normally See in Fictional Tales of Chronic Illness?
Cancer, clearly, lives in people’s hearts and minds. From John Green’s The Fault in Our Stars to the recent Thor run, cancer takes a front stage because the outcomes often devastate lives. The visibility of hair loss and hospital rooms make cancer a chronic illness infused with dramatic moments.
The publicized stories of MS come with the physical disabilities. The people who can no longer walk. The active woman who has a relapse and becomes wheelchair confined. Again, this dramatic visual yanks heartstrings, creating those perfect movie moments.
As with any other misunderstood group, people with a chronic illness see the worst of their lives hashed out in public media not only misrepresenting their reality but reminding them of their worst outcomes.
What Is the Reality of Chronic Illness?
Most people living with chronic illness have no dramatic moments. They live silent lives of pain. They wake up every day knowing that it will be a struggle to move, to parent, to grocery shop.
They know that at some point those difficulties will become worse, but they never know when.
They listen as people call them lazy. People tell them to stop taking medicine but go on a special diet. Just exercise, and you won’t be fatigued we hear. Stop eating gluten. Take these herbal supplements and your pain will stop. And yes, sometimes these suggestions help. Most often, they don’t. Because people with chronic illness have bodies that kind of hate them.
They hear doctors explain to them that nothing’s wrong because so many invisible illness symptoms overlap between disorders. A neurologist will say, “this doesn’t sound like MS, go see the rheumatologist.” The rheumatologist might say, “None of the test results show anything, so go see the neurologist.” Being diagnosed becomes a battle on its own.
What Causes Chronic Illnesses?
Well, that’s a great question. Many of the invisible illnesses come from having autoimmune deficiencies.
In other words, our bodies just hate us. Our bodies are fighting against themselves.
We get colds more easily. We stay sicker longer. Our bodies are so busy trying to fight off our bodies that we’re tired just from existing.
And yes, there’s the spoon theory (note the original story is here but the link is broken). We all know it. We all talk about it. To a larger extent, it’s not wrong.
Honestly, though, sometimes we’re so out of utensils we have no more forks left to give.
What Does Chronic Pain Feel Like?
The irony of chronic illness is that you get used to pain. You sometimes forget that other people don’t live with the pain.
Chronic pain can be sharp and burning. Sometimes, it creeps up on you while you’re walking the dog. Sometimes, you wake up with it.
Chronic pain can be a flu-like ache. You wake up feeling like death. You don’t have a fever, but every part of your body aches. Your muscles, deep down inside, feel sore. You know that feeling in your shoulders that comes from being overstressed? Imagine that constant painful ache all day, every day.
Chronic pain can be numbness. You know when your hand or foot falls asleep? That second right before the pins and needles start? People with invisible illnesses have that feeling, and it can last for hours. It’s called neuropathy. That numbness turns to burning pain, the same pain you get in your hands on a cold day when you try to warm them up with hot water.
Coping with chronic pain means medications, or not if they stop working. It means continually fighting to do the things other people do effortlessly. It means no longer climbing jungle gyms with your kid and not being able to play soccer with your kid.
Coping with pain becomes a decision-making process. If I do something today, I might (or maybe not, my body is fickle) have to spend tomorrow in bed. Coping with pain means people ask you consistently if you’re a drug addict because your pain requires medication. Dealing with chronic pain means people stop wanting to hear about your life because they don’t want to know that you had to stay in bed, it wasn’t a choice.
What Characters With Chronic Illness Can Teach Us
The problem with an invisible illness is precisely its lack of dramatic visual. People with chronic illness live all around you. Yet, unless they tell you about their experience, you will never know.
Over the last eighteen months, since my own diagnosis with MS, I’ve noticed a lack of characters facing situations like mine. Until I read Bloodline by Claudia Gray.
If you want to know what living with a chronic illness is like, you need to read Bloodline. No, we’re not talking about Leia here. We’re talking about Greer Sonnel.
Most of what we know about Greer throughout the book is that she trained to be a starfighter pilot on her homeworld Pamarthe after which Han Solo mentored her until she mysteriously had to quit flying. She became Senator Organa’s personal assistant.
Capable and intelligent, but always seemingly hiding something, Greer’s role with Leia is one of confidante and aide. However, throughout the story, Leia seems protective of Greer, ensuring that she does not become too overwhelmed by her role.
Why? Because as we find out towards the end of the story, she has a chronic illness called Bloodburn syndrome. With no cure, Greer relies on Hadeira syndrome to control the disease and must avoid stressful situations, like flying, lest the condition lead to severe fevers.
Greer’s career as a pilot was cut short due to this invisible illness. Greer’s dreams were stifled due to her body. Only a few people know about her invisible illness, lest they treat her differently.
This is what we can learn from characters. While Greer often scoffs at the concern other characters have for her health, she also realizes her limitations. She mourns the starfighter pilot she would have been, but she grieves alone.
Greer shuns pity, creating a new life for herself that incorporates her disease. Greer’s story brings home the importance of understanding invisible chronic illnesses.
Despite the limitations, we find our way. We talk about our limitations, not for pity or sympathy, but to empower and spread awareness. Greer silences those who know about her Bloodburn because she fears them treating her as disabled. She is differently abled than she would like, but she still wants to be part of the Rebellion.
This Is the Moral of the Story
This is the lesson. This is the reason we need more characters with invisible illnesses. The majority of chronic illness representation treats us as people to be pitied. People place sad emojis on Facebook posts mentioning our struggles. People assume that not speaking about our lives means that our illnesses left us free to be who we were.
The reality is: we will always mourn for the person we remember being. We will take risks and make poor life decisions to recapture those moments, just as Greer did.
We are not reckless in doing so. We are living our lives. We are attempting to create a new normal.
You won’t always see our struggle. We won’t always discuss our struggle. Our battle may be shaking hands or aphasia (forgetting words, inability to complete thoughts). Our battle may not show in our gait or our speed.
Our struggles are those that come with knowing our lives have changed, but we still need to live them.
What do we want from you? Not a lot. We want empathy. We want acknowledgment of our struggle without the sad pity face. We want you to know that when we choose to spend our energy on you, it means you matter.
We want you to read stories that incorporate invisible chronic illnesses. And, for those writers out there, we want you to write those stories so that others may read them.