Disclaimer: The stories on this blog touch on difficult issues and experiences.
CW: This week's story involves situations pertaining to chronic illness.
I know what I want to talk about but I don't even know how to say it. I guess I want to talk about being chronically ill but no one either believes you...or they just don't see it. People look at you and they're like, "What do you mean? How do you feel that way? There's no way your neck feels like it's about to fall off, or that your bladder is burning so badly it feels like you're being stabbed with knives."
I remember seeing a gynecologist when I was younger, and it was scary. I don't remember why I was there, obviously I was having issues and they just couldn't figure it out. All throughout middle school, periods were awful. But everyone was like, "Oh, it's normal, it's normal, it's normal." And I'm like, "Okay, I guess changing a pad every half hour is okay," but it wasn't. But when I was younger, I always said I felt like I was sick but no one believed me. It was always, "Oh, you're just trying to get out of school. You just don't want to do this, you just don't want to do that." But thinking back on it, it's like what if I was actually sick? And then with my period, I would wake up and it would be like the whole bed was soaked. And I would tell my parents and they would say, "Oh, that just happens, it just happens. It's because you're young, it's because it's new." And you believe everyone when you're young and you don't know any differently.
And then high school was awful. I had constant UTIs, constant yeast infections, and we'd go to the doctor, and she was a gynecologist and she would say, "You don't have a UTI. It doesn't show up you don't have any STDs, you don't have any infections. But if it quacks like a duck it quacks and you're quacking, but there's no duck." So she'd give me like a fist full of prescriptions and sent me on my way.
I got pissed off enough, saw a doctor, had a surgery, he couldn't figure it out, he sent me to a new gynecologist and that's when they hit me with Endometriosis. I was pumped. I cried I was so happy I had a diagnosis. But then I didn't know what came with it. Everyone apologized, they were like, "We're so sorry it's Endo, we're so sorry," and I'm like, "Why? I'm happy I have Endo, it proves that there was something wrong with me. Now they can fix me." Well, you can't fix Endo, and I didn't know that.
I had the first surgery, and it fixed me like completely. It was night and day. I didn't have the pain I had, I was able to do things, wasn't in the bathroom every hour. I was even on the news because my doctor used a new type of surgery. And it's so embarrassing to look back on it because I was like, "I'm pain free! I can do anything! Life is so great!" Well then like six months later I was back under the knife. That was 2013, the last surgery was 2016. But in between then I had four laparoscopic, two D&Cs, and they took my appendix out too. All in three years. All because of Endo.
And then after the last surgery it was like, I was dying. The next day it looked like Alien, like I had this thing growing out of my stomach. My parents freaked out and took me back to the same hospital that I had the surgery at, and after they ran all of these tests, they sat me down and they were like, "We think you have Endo." And I was like, "No shit. Did you not read any of my charts? This was the first thing I told you when I came in here." But I went and saw the doctor the next day, he couldn't figure out what was wrong with me, and he sent me to my primary. He couldn't figure out what was wrong with me, so he sent me back to the GYN that did the surgery. And he used the quote, if you've ever seen Pearl Harbor, he was like, "I'm afraid all we've done is awaken a sleeping giant." He's like, "I don't know what's wrong with you, but my guess is that we've awoken something that we can't figure out." And I was like, "Okay, so what do we do?"
And then life was hell, I was under 100 pounds. I was throwing up all the time, going to the bathroom all the time, this, that, and the other. And then, I don't know, a year of just being frustrated, I lost insurance then got insurance. And then I saw new doctors and they hit me with Pudendal Neuralgia (nerve pain in the pelvic area), Interstitial Cystitis (chronic bladder condition), and Ehlers-Danlos (loose joints).
I had to change my diet, avoid certain foods, PT helps but that costs a fortune. My joints aren't holding on to each other so my muscles have to work extra hard to hold my joints together. As kids we were always able to do weird stuff with our joints, like hypermobility.
All of these things going on, and you can't see any of it from the outside. It's day to day. On rainy days, I'm tighter, stiffer, sleepier. It's easier to not do anything when it's raining. Other days I'll wake up and get sick, kind of like morning sickness. Or I'll wake up and just feel like I'm burning like crazy, like something is just wrong with me. A million and one things. I wake up with cramps. Or sometimes I wake up with nothing, and it's like, "Hell yeah! I'm going to have a great day!" And then halfway through the morning, it'll hit you. Or halfway through the day, it'll hit you. You just never know.
I can get really upset if plans change last minute, like in my every day life. The time will change or something and people don't understand. I had an ex boyfriend who would get so mad at me and call me a child if I got upset when plans changed last minute. But I'm like, look. If I can have control over anything, let it be plans. I have no control over myself, my body hates me, it switches at the drop of a hat. If I want control of anything, just let me have plans. Sometimes I can handle it and just go with the flow, but other times it's just frustrating. But you don't want to tell people that. I don't like to complain about it, but if I'm told we're going to drive and not walk, I'm like, "Great! I don't have to worry about my feet or legs or back hurting, or slowing people down." And then last minute it changes to walking...I don't want to make a whole group of people drive because of me. And it's a 50/50 shot. I could be fine walking...or it could be hell on Earth. I don't know that.
It's no ones fault, unless someone goes through it themselves, they're never going to understand, They look at you and think you're crazy, or they look at you and try to...I don't know. I feel like a lot of people just don't care. I don't have many friends anymore, I have my dogs. And it's none of their faults, but my friends just don't get it. When I first had surgery, a lot of people checked in on me. By the fourth, it was like no one. And that was the serious one. And I didn't get a text or phone call. I got, "Well you already had surgery, how bad could it be if I see you around sometimes?"
I hate to say no one gets it, but it's so hard to find someone that does.