It’s rare disease day. It’s a weird day – it’s not really one I celebrate, but one that needs mention, I think.
I suffer from many rare diseases. Too many to mention. I’m in the process of getting more diagnosed. My body is fighting a war against itself. If you looked at me, if you just glanced at me, you’d have no idea. You’d have no idea that my body is not capable of keeping itself healthy. It’s not capable of protecting itself.
That I suffer from heart problems, lung problems, neurological problems, vision problems… it adds up. It takes a toll. I’ve had doctors literally throw their arms in the air and say they can’t help me. That they don’t know what’s wrong with me, just that I’m sick. Just that I’m broken. Just that all we can do is try and treat the symptoms, and pray that it works.
It becomes medication roulette. Add in that on top of all this, I have mental health issues. It feels like everything is collapsing. That I’m nothing more than a pile of disorders, a pile of symptoms.
I don’t feel it helpful to list out all my disorders. I don’t want to look like someone who is just another disorder. But I do want to bring awareness to the feelings. To the pain. To the emotions.
It’s so hard when I watch people in my life get quick diagnosis. When I watch people find out what all is wrong with them. While I am trapped in limbo. I’d rather know I had a disease with no cure than to be told “we don’t know what’s wrong with you, sorry.” I have many diseases with no cure, but that’s not all. They know there’s more wrong. They just don’t know what.
Being sent from doctor to doctor sucks. I’m on medical leave from college. I am drowning in debt for a degree I’ll never get. I get told I’m lucky to be able to spend my days sleeping, on the internet, playing video games, and watching TV. But I would trade nearly anything not to have this life. There are days when I’m too sick to sleep, too sick to play games, too sick to watch TV. And no one knows why.
I don’t want a cure, per se. I just want to be able to have a fulfilling life. to be able to live my life to the fullest extent possible. But right now, it’s not possible. Right now, my life is a mess of appointments, of tests, of procedures. And it doesn’t show any sign of getting better. It doesn’t show any sign of not being improved.
It’s fucking HARD. And on top of it all, I get well meaning people who tell me that I’m an inspiration. Who tell me they could never do what I do. You know what? I can’t do what I do. But I have to. There is literally no other choice but to carry on in the best way possible.
I get well meaning people who tell me that I’m SUCH an inspiration for doing every day tasks like getting a frock-fracking Dr. Pepper (yes, it actually happened). You wouldn’t say that to someone who is able bodied, so stop.
I get well-meaning people and you can mean well all you want, but it doesn’t make it right. I get told that I’m so lucky to not have to work when I would love to work. I have hopes and dreams and I will never achieve them. I’ve had to rework my whole life at age 27. When I graduated high school nine years ago, by now I expected to have my master’s degree and a job. A husband. A life. And I don’t even have an associate’s degree.
I feel so empty. So hopeless. I feel like there is no answer, there is no cure. I find myself longing for relief from the pain. To not have to take over two dozen medications daily to JUST be able to function. And to have days where I can’t even function because I’m too sick to keep down said medications.
It isn’t a life I would wish on anyone. At first glance, I look normal. When I have my crutches, which is most of the time, you may think that I just have a walking impediment. But it’s so much more. My life is so much more.
I long for answers…knowing is better than not knowing. I’m sick of being referred from specialist to specialist, just to be told that once again, they don’t know.
It’s so tiring. It’s so overwhelming.
But this is my life. This is it.