Imagine you were sick all of the time. Imagine that you couldn’t go one day without feeling like your world may be crumbling into pieces as you sit at your desk at work. Too many people, myself included, live in this dystopia.
What I’m talking about aren’t illnesses like cancer or heart disease, two very serious chronic illnesses that require constant medical care. What I’m talking about are people living with less common or lesser-known illnesses such as what I and at least 9% of all women worldwide suffer from, vulvadynia. Vulvadynia is a catch-all term used to describe women who experience a broad range of pain-related symptoms from painful sex to pelvic floor muscle dysfunction and beyond.
In my experience, people who don’t suffer from my condition are rarely able to grasp the idea of what I experience in my day-to-day life. I can imagine this sentiment is likely the same for people who suffer from other chronic illnesses that interfere with their lives, even in the tiniest ways.
Here’s what it’s like:
It’s like living in a world that only gives you the potential of being 95% happy. Sure, 95% is great and when you reach that point it may feel like you’re on top of the world (or at least the little word you live in), but in the back of your head, that 5% missing is gnawing at you more and more each moment, and you chase after the impossible idea of achieving it. You wish every day that you would be just as happy as your friends are when you’re all together at an amusement park, but instead you feel happy — with a side of fear and worry.
It’s like you came up with the worst thing that could happen to you, scribbled it down on a piece of paper, and then it came alive and engulfed you. Sometimes it’s actually like living in a nightmare, especially when your symptoms starts to act up and you become even more aware of what separates you from the pack — your own weakest link.
It’s unfair to the point of sheer inexplicability when people don’t understand your symptoms and feelings — or at the very least don’t consider them “valid enough.” Like when you tell your boss that you’re not feeling well but he doesn’t care enough or understand why you’re always sick yet never show visible symptoms. And the minute your illness is called into question, your mouth begins to quiver and your stomach drops 100 flights. Tears had never rushed to my eyes this quickly before I was sick.
It’s like you’re living with an invisible demon on your back. To the naked eyes of the world around you, you look just like everyone else — you’re fit, well-dressed, smiling, and working a job just like the rest of them. But the demon that only you can see is what draws a sharp and painful divide between you and them; everything you do has to come with an extra push from within. You feel pressure from your on-lookers to be just like them so you have to act like none of those thoughts streaming through your mind are valid, even though the pressure of those thoughts is beginning to weigh you down like a pile of bricks.
It’s like you’re screaming to a room filled with deaf people. Maybe they can see the troubled expression on your face, but they can’t hear your cries or even understand the language.
It’s like, behind your normal-person image, you’re forced to live a secret life.