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Chronic illness gives little wiggle room for peace of mind. Having “good” days doesn’t mean the pain isn’t there; it just means that it’s not as noticeable—like a limb that’s sort of falling asleep but still functioning. Days where I have energy can end abruptly for no reason other than fate playing games with me.
“I find that the books with the saddest endings are the best because they make us feel. We don’t always get a happily ever after no matter how hard we work for it.”
Going out when I don’t feel well is too much of a hassle. Pretending to be okay for the sake of others is a draining act to an already underpaid show.
Pain comes in countless forms. The worst is seeing what your suffering does to everyone around you.
Forcing the thoughts out of my head, I lose myself in my novel. It’s better than thinking about reality. Reality is ugly and painful and full of the kind of heartache that some books help you forget exist for a short period.
Staying in the past means halting the future.
“Because we like books?” He lets me go down the staircase first because of the narrow structure. “Because we like them more than reality. It’s easier to lose yourself in fiction, right?”
“The thing about chronic illness is that you never know what you’re going to feel like when you wake up every day. It’s a new battle, because the good days don’t mean that you don’t hurt. They just mean that you can tolerate the pain better.
“We never truly get over losses,” Cam tells me, walking us to the salon’s glass entrance. The windows stretch from floor to ceiling, with two wide doors centered in the middle that have white print on them with store hours. “We just absorb them until they mold us into someone new. Like any creation, it takes time.” “What does?” “Creating a masterpiece.”
The trouble with time is that we only think we have it. It’s an illusion—an excuse to linger in existence. Some people use it to be reckless; others use it to hold themselves back.
“Sickness isn’t pretty,” I whisper. “It turns the person you love more than anything in the world into somebody different. It isn’t just a physical transformation but a mental and emotional one. When it takes over, there’s very little in their control they can do.
Disease is the monster in the dark. It lingers, waiting for the perfect moment to strike. It rears its ugly head and takes what it wants, when it wants. Yet there’s one disease that is worse than any kind of invisible illness in existence, and it is something the world is plagued with. Indifference.
I’ve heard people talk about my image for too many years. On days when you feel closer to death than ever, they’re a blow to the gut. It’s always about looks. You either don’t look sick enough for anyone to believe you, or you look so sick people feel the need to point it out.
Doubt is fear’s best friend—the
So we pretend. We pretend our loved ones are still close to us. We pretend we’re okay. It’s not denial. It’s coping. It’s reassurance.
“Healing doesn’t mean the damage never existed. It just means that it can no longer control our lives.
Chronic illness is real. Death is real. People don’t like to read about those things because they know it could happen to them. Distance or not, you put yourself in the shoes of every character you read. Denial doesn’t make the fear go away. It expands it. Feeds it.
There are advanced cases of some diseases that show just how much they impact people externally, but most times it’s an invisible internal battle. People think sickness has a face.
They think disease is an ugly word. I used to be embarrassed by it—maybe I still am. Nobody in their right mind thinks disease is a pretty thing. Most people associate it with things that could be controlled, as if it’s my fault I’m sick.
Strength doesn’t come without a price. If there’s anything I’ve learned over the past few years, it’s that you’re forced to fight when you don’t have the energy and have no chance at surrendering even at your worst. Strength doesn’t have a definition. We all have it. We just might not all think we do because it’s buried under layers of pain and depression and anxiety. The truth is you never know how strong you are until being strong is the only choice you have.
“We get one life. One chance. One opportunity to live. Why should I spend that in more pain than I already do? Anybody can hurt me, but if I choose not to let them, I can find some solace in what life has given me. It’s not much, but it’s something.”
“When you have a disease that nobody can see and they find out, most of the time they won’t even believe you. On the off chance they take your word for it, they say the stupidest things, like I can be cured if I sleep more or eat healthier.”
Diet is always important to stay healthy, but healthy isn’t a universal concept. Eating a carrot won’t make the swelling go down, and running the mile certainly won’t help me walk better the next day.
“It’s already tiring to live the way I do because my body is attacking itself, but having everyone else attack me becomes too much. I have to deal with everyone making their own conclusions about me when they hear I have an autoimmune disease. Like being told to not get stressed, like I’ll be cured for life then. And don’t get me started on those who think I’m making it up. People rely too much on what they can see because everyone says that seeing is believing. It’s never been that way though. It’s always the other way around.”
“How do you deal with it?” he asks once I set my glass down. “Honestly?” I shrug. “I don’t.” His brow quirks. I elaborate. “Some days it’s easier than others to just let what people say bounce off me, but that doesn’t mean it doesn’t bother me at all. I’m just good at pretending it doesn’t.”
Any of us could pretend like we’re invincible and put up a front in the public eye, but behind our masks are tearstained faces.
Fiction has a way of revealing the types of truths that reality obscures. There’s nothing that books can’t talk about, regardless of how readers interpret them. We can accept or deny what we want, but the facts are still immortalized on paper.
When you have a chronic condition, you spend a lot of your life being doubted by others. Not all diseases can be seen. In fact, a lot of them aren’t. That’s why invisible diseases can be so deadly—because nobody knows they’re there until it’s too late.
This book is the representation of something very rarely found in literature. Often, we’re scared of reading stories that remind us of real life. I get it. We all want to escape reality, right? Reality always finds us, though, when we finish the last page.
Fiction can speak millions of truths that we’re not always willing to hear in the real world.
