Ah, good ole' chronic illness. We've all heard of "it," but do we really know what "it" is? Let me start by telling you, having a chronic illness is neither easy, nor is it fun. I know, you hear stories of how people with a chronic illness can't work, or can't attend school. A lot of people think that victims of having a chronic illness are living the dream. No work? Great! No school? Even better! But let me tell you, anyone who thinks that is wrong. I know this because I have a chronic illness, and it has taken my life away from me.
No, I'm not dying or anything like that. When you have a chronic illness, you slowly watch your once "normal" life disappear from you, right in front of you eyes. It's a deep hurt that will never go away, no matter if it's been one year, ten year, or even twenty years. It will always be a part of you. You lose your social life, you see so many doctors that you lose count, you start new medications... the list goes on. Having a chronic illness is living a life of trial and error. Take me, for example. I was diagnosed with Ehlers-Danlos Syndrome in April of 2017. For those who don't know what EDS is, it's a connective-tissue disease that is genetic, our collagen is basically like silly putty, so it has a hard time holding our joints in place, plus many other complications. There is no "real" treatment for it yet, and there is no cure. Anyways, it took me four years to get an official diagnosis. It can take even DECADES to get an EDS diagnosis, but I'm one of the lucky ones. I can't even count the number of doctors I saw in those four years. My knee, my hip, my shoulder, no matter what joint it was, it wouldn't stay in place, and no doctor could figure out why. They thought it was in my head, and had no trouble with doing so. They suggested that I see a counselor, or a psychiatrist. Even know with my diagnosis, I still have doctors like before, who think it's all in my head. EDS is not well-known, but once doctors hear the words "Ehlers-Danlos," they automatically assume that it's in our heads. They don't get to know us. They judge us before they even meet us. Besides the geneticist who diagnosed me, I think only two doctors have listened to me, out of a total of fifteen or more. That's right, only two listened; the others judged me before they met me. That's only one trial and error of having a chronic illness.
Medications are a big part of our lives. I've tried a total of maybe 30 or more medications, and they all caused major side effects. I know people who take a combination of maybe forty different pills, and it doesn't even help them with their symptoms. For me, I only take Prozac (for anxiety and depression), and tizanidine (for muscle spasms from a failed spine surgery). I was on Cymbalta, but I weaned myself off of it because the side effects were horrible. I didn't feel like myself at all. I felt like a zombie. I felt suicidal, so I knew that I had to stop taking it, ASAP. I think I have maybe ten drug allergies total, all of which either give me a rash, or upset my GI tract so badly that I end up in the ER. But hey, if you never try, you'll never know, right?
Friendship is also a trial and error of having a chronic illness. As in, you find out who your true friends are. My best friend and I both have EDS and Dysautonomia. We started out with a fairly large group of friends at school. When Amanda got sick, they all dropped her like she was nothing. Then, they did the same to me. That's another type of hurt that doesn't go away, you'll always have that feeling of abandonment in your heart, no matter how long it has been.
Not everything about having a chronic illness is bad, though. We find so much support online through groups on Facebook, or people on Twitter or Instagram. We are called the Spoonie Community. What is a spoonie? A spoonie is anyone with a chronic illness. I know, you hear "spoonie" and think "why spoon?" When you have a chronic illness, you have to conserve your energy throughout the day. We get twelve spoons, and each activity subtracts them, depending on the activity. Say I have six spoons, and I take a shower. When I'm done with my shower, I will have two spoons left, which means that I barely have any energy. It's different for everyone, that was just an example of me. Let me tell you, if I didn't have Amanda and online support groups, I don't think I would be here writing this. It's been two years since I watched my "normal" life slip away in front of my eyes (I had spine surgery in 2016). It's been two years since my "friends" left me, like I meant nothing to them. It's been a year since I had to drop out of my senior year of high school. I'm not asking for sympathy, I'm telling you how it really is to have a chronic illness, because not many people know what it's really like. Well, let me tell you, my journey has just begun. I still have many, many more years of trial and error ahead of me, but I won't give up, because I am a fighter.