Okay ladies and gents, let's set some stuff straight. I'm so sick and tired of hearing these things from people that don't know what they're talking about. If you aren't sure, keep your mouth shut, got it? Because you just don't know. And you'll never know, until it affects you. And it likely won't. And that's okay, because I would never wish this upon anyone. Not the people that say this or the worst people in the world.
#1: We don't sit at home and watch TV all day
We are in chronic pain. Meaning all the time. Meaning never stops. Meaning it's a good day when we can get in 1 TV show. Possibly a half hour. An hour on a really good day. Maybe two on some miraculous day. So stop assuming that because we're at home, that we do the shit you do when you are at home. We do not get "days off" we get days where our pain is so bad that we absolutely cannot tolerate leaving the house or maybe the bed. Stop being an assuming assbutt.
#2: You do not work harder than we do
I came back from a week and a half stretch of being ridden with pain and frustration at not living a normal life on time. Pulling myself out of bed was the hardest thing in the world. The punches in my brain screamed at me that today was not the day to do this. But I didn't care. I missed my friends and the regularity of a schedule and having things to do. This day happened to be a few days before a big break. Winter break to be exact. Upon making it (proud as a new mother on her child's first successful day of school) to my first class without dying, I joined in the hype. I got shit done and socialized my ass off. And that's when someone said it. I made the "mistake" of saying that I, too, was excited for the upcoming break. And this person has the nerve to look at me and go, "Why? You're never here anyway." Which meant, "Why? You don't deserve it as much as we all do." BULL SHIT. You do not work harder than I do. Just because you were able to get out of bed five days in a row as compared to my one, that does not mean you deserve anything more than I do. I won't say that I deserve this break more than you, because that would be pretentious. My break and your break will be 100% different. So calm down and put your pants back on.
#3: I still do the same work that you do, so don't tell me I cheated
I remember sitting and talking with my friend (who is super awesome and understanding of my condition) when some girl was passing out papers saying who got honors and such. She stopped at our table and threw the paper at me while saying, "How do you get honors?" Struck by the strange question, I responded, "Um, you have to get a 91 or higher I think." She shook her head, "No, I mean how to you get honors?" And then she glared at me, waiting for my response. Not used to being under pressure of this sort, I just kinda shrugged and squirmed in my seat. She left. Now I knew exactly how I had gotten my honors. I had been responsible and gone to every teacher in the beginning of the year and explained my condition to them and worked out how to get stuff sent home so I wouldn't be behind. Yes, I did get extensions, but that doesn't mean that I don't work just as hard, if not harder, than you to earn my 95s. I make up tests that I miss, I do the homework that is assigned and I take notes when I'm in class. I'm not gliding by. I'm climbing the same mountain you are, except my side has a bunch of missing rocks and I have to take breaks or I'll fall and possibly never get back up.
#4: Stop assuming I died
This is possibly one of the most hurtful things you can say to a person. "Where have you been? I thought you died!" NOT COOL. This is mostly because at many a given time, I felt like I was or I wanted to die. But those weren't options, so I slugged through the swamp and emerged what I'm told is victorious. I missed my friends, I broke down, I missed social events, I couldn't get out of bed without returning an hour later some days. So did I die? Yes, I did. I'm not regular. But just because you don't see me, don't assume I'm dead. If I were, you'd hear about it on the news. Seriously, it hurts. It's like you want me dead, because my return confuses you more and more every time you somehow see me after two months.
#5: Don't make jokes about my condition
Don't tell me I'm faking. Don't tell me it's something I'm eating. Don't tell me it's because I need to lose weight. You are not a doctor. I have seen over ten doctors. You don't know anything about what is happening to me. Do not diagnose me. Stop trying to fix me. I just want your company. And when you aren't trying to fix me, you are joking about my condition. The above four topics, particularly 2 and 3 were instances in which I'm angry about now and can joke about now, but at the time of occurrence, killed me. Made me want to cry. Because people are mean and don't understand how hard it is for me to live with a professional kickboxer inside my head who is constantly training for some big event. You don't know what you're talking about. You are hurting my feelings. Stop being a jerk.
#6: DON'T EVER TELL ME IT'S BECAUSE OF THE MEDICINE I'M ON
I once had a friend who I was very close with and who I had a lot in common with. We bonded quickly and hung out a lot. We really shared some deep stuff. Upon being friends for a month, she proceeded to tell me that my headaches were probably because I was taking too much medicine and if I stopped maybe they would go away. And she said it so much that one day I decided, "Screw medicine! I'm not taking this shit anymore! I hate the way it makes me feel." So one night, I didn't take my medicine. And my mom came in and looked at me and told me she wasn't leaving until I took my medicine. We stood there for two hours, arguing back and forth. And tears were dropped, mean things were said and confidences cracked in half. (My mom is a pharmacist btw. Meaning she knows her shit more than a 16 year old high school student) And in the end I did take it, but by then I was broken. I didn't trust anything. I hated everything. All because of this one person, who got in my head. Safe to say that in the end (which is now) we aren't friends anymore.
And finally:
#7: Do not tell me to not freak out because there are other people who have it worse
I am aware that I do not have cancer. I am aware that there is a five year old child that does. And guess what, we share the same boat. Granted, their side of the boat has holes and they are sinking. But I'm sinking too. We are both drowning. The difference is that kid has a diagnosis. And that kid has treatments. And that kid, has answers. That kid has definity. I am just floating in this ocean of uncertainty. Will something show up on my MRI some day? Will I ever find out what exactly is wrong with me, how to treat it and if I can pass it to my kids? Will there ever be answers. I get it, that kid has it worse, because they are a child and they do not have good success rates. And they have to go through chemo and stuff. I feel for them. But them having it worse, does not make my pain any less real. We both hurt. We both have lives that suck. In the end, it's not who has it worse, it's that neither of us has a cure. Our boat is still sinking.
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