Long-term illness is not like you see in the movies. It is not the quiet, pretty, good little girl who it turns out is secretly suffering from a life-threatening illness. It is not a reclusive billionaire who is really hot if he just shaved and who decides not to live because what is the point of living if you are in a wheelchair. It is not a gorgeous, pale woman with subtle makeup lying tragically in a bed, staring out a window and living only so someone can be her savior. It is not the optimistic, sweet yet sometimes sassy little girl who helps you discover the how to live again before she tragically passes away from cancer without showing any outward signs at all ever. It is not the invalid who just needs a little fresh air to suddenly be completely healed. It is not two kids trashing a town because that's how one learns to "live" and they're going to die so they might as well "live" as much as possible.
When I was younger, I used to cry that I was not "pretty" sick. I wasn't a beautifully thin child in a warmly lit room, surrounded by toys and cards and balloons and other gifts. I was constantly yo-yo-ing up and down fifty pounds, as medication side effects played with my body shape. I swelled up to three clothing sizes larger in the afternoon, then woke up back down those three sizes. I was eleven the first time a stranger asked me when I was due. I wasn't tragically weak and sitting outside in a wheelchair, taking in the sunlight that would magically heal me. I was told time and time again by school counselors that I was sick only for attention. I was horribly harassed and traumatized every day by my peers at school, and while that for sure played a part in my mental health and mental health does affect one's body physically, it had absolutely nothing to do with my underlying actual physical issues. I was compared to the Secret Garden boy and the Heidi girl over and over again. Maybe I should try yoga, go out in the sun more, try a sport, etc. And then there was the "why aren't you dead yet?" question that I got time and time again from peers, teachers, strangers, and well-meaning family friends. I began to wonder when my illnesses would finally kill me. Everyone else seemed to think that being sick for a long time inevitably led to death or it wasn't real. And everyone couldn't be wrong, right? When my stomach pain got so bad it led to dizziness, sweating, vomiting, and fainting, I hid how bad it was for two years. Two whole years I let my family believe that I was just doing regular pre-teen girl things like makeup or dancing or whatever in the bathroom when really I was having spasms in whatever dark corner I could find because either I would die tragically soon or I was really making it up and didn't realize it and it would go away soon. Watching movies that portrayed illness just made me feel so incredibly inadequate. Something was super wrong with me that I wasn't like what I saw.
Long-term illness is greasy hair, smelly bodies, dried vomit on toilet seats. It is realizing in the late afternoon that you haven't brushed your teeth all day so many days in a row that your teeth ache. It is doing your hair and being too exhausted to do makeup or get dressed. It is looking around at the house and realizing that while you've done the dishes, every other room in the house remains a disaster and you simply cannot get up to clean them. It is applauding yourself every time you manage to get from the bed to the couch. It is realizing you've already watched every episode of every show you want to see on Netflix and Hulu and resorting to watching things like Divorce Court because at least you haven't seen every episode twelve times. It is suddenly realizing that you've got an infection starting near one of your surgery scars and being terrified that you'll end up in the hospital with a blood infection and then calling the doctor's office and getting an appointment for a week from now and being terrified that this appointment isn't soon enough. It's managing to feed the dogs, let them out, and that's about it. It's sitting on the couch extremely hungry, but being too exhausted to get up and make yourself something to eat. It's getting dehydrated because your legs decide to not let you walk to the faucet and you've run out of water in the pitcher by your bed. It's keeping a notebook with you with all the important information you need to remember because you can't remember any of it by yourself. It's being dependent on other people for your care. It's being dependent on a dog for your care, sometimes. It's holding a degree from a top liberal arts college and not being able to use it because you can't work for one hour a week, let alone forty without ending up in the hospital for a week. It's having to have so many reminders and systems in place for medications and still forgetting to take the right pills at the right time. It's having your service dog annoy you until you realize, "Oh! It's pill time!" It is people telling you that you are so brave for continuing to live. It is people telling your significant other that they are so brave and good and pure for staying with a horrible medical mess monster like you. It is strangers offering you advice. It is strangers glaring at you for parking in handicapped spaces because you're too young to be ill. It's fighting hard to be heard by doctors. It is crying with relief when you find medical professionals who help you. It is crying in despair because you've woken up in pain yet again just like you have for the last twenty or thirty or forty years. It is seeing spots when you bend down to pick up a towel you've dropped. It is falling down stairs, falling in bathrooms, falling in kitchens, falling at friends' houses, falling in grocery stores, falling in movie theatres, throwing up in every single public bathroom in your surrounding area, passing out at an event that was supposed to be about a friend or family member but now is about you because you've passed out. It is waking up on the floor of the bedroom unaware of how you got there or when or if you've hit your head or broken bones. It is knowing the EMS personnel by name (Oh, hey, Len. How was your kid's dance concert?). It is comparing and contrasting hospitals in the area in casual conversations. It is trying desperately to not bring up your health in regular conversations. It is a constant struggle. It is ugly, it is brutal, it is exhausting, and it is gross. Depending on what you've been diagnosed with, you might be on the highway to death or you might be trapped in a debilitated body for years upon years.
Yes, it makes you stronger, but it's because you have no choice. You have no choice but to fight every single day. You are literally fighting for every breath you take and every tiny task you complete is a reason for rejoicing. I would pay so much money to go see a movie that portrayed long-term chronic illness or terminal illness like that.
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