I will never forget the day my high school administration thought it was okay to put me in a storage closet.
It was the day of the AP Statistics Exam, a test my parents had paid $90 for. I was registered under students with disabilities, so I could not take the exam with the other students in the gym. They thought the perfect location for me to test would be in a storage room right next to the dance studio. It was super cold, super cramped, and me and my testing proctor had to take out the supplies from it. I had never felt so disrespected.
In a way, this was a metaphor conveying how people with chronic conditions are treated. It had been a year since I developed fibromyalgia, which means during the previous school year, I tested in the gym with all of the other students who had all of their needs attended to. I was part of the student body that the school saw as worthy of quality treatment and respect. I was part of the student body whose success the school wanted to ensure; I was abled. After I became disabled, they put me in the same room as unnecessary, worthless supplies as if I was one of those materials my proctor and I had to take out- as if my potential was suddenly dispensable. They couldn't have made it more clear to me how much my life had changed and what kind of journey I was in for.
People with chronic conditions are disrespected all the time. People have laughed in my face, people have given me so much unsolicited advice, people have questioned the validity of my experience, people have made me feel bad for wanting to take medication for my pain, and the list goes on. Just two days ago someone thought it was a great idea to be facetious and use my condition to entertain those around him: "Oh yea do your veins still hurt or something? Oh wait sorry, your joints or whatever it is, something like that. What do you have again? Something called fibro-malaysia? I don't even know"
It is so easy to be kind yet people fail at it so often, but that doesn't mean we should tolerate it. If you have a chronic condition, don't tolerate rude behavior and lack of empathy from other people. We have to be our own advocate and our own support. We already have to tolerate crap from our own body, we shouldn't and don't have to tolerate it from other people. It is okay to say:
"I don't appreciate you laughing at my health issues."
"I would rather talk about this in private."
"Thank you for your advice, but I know how to handle my health issues."
"What you just said is very disrespectful."
"Don't talk to me like that."
People will try to make us feel irrational and worthless, but we're not. We need to show up for ourselves. Your potential is not dispensable; you are not dispensable.
Right as the proctor was about to start the timer for my exam, I stopped him and said, "I'm sorry I cannot test in here. My parents have paid a lot of money for this exam and I need a better testing environment." He spoke to the administration and they moved me into an office space. I took the exam, and I got a pretty excellent score. That incident taught me I need to stand up for myself, otherwise people will try to take advantage of the fact that I am different from them. I AM different from them, but I'm just as human and just as deserving of the respect they give to those they consider their equals.
I am still learning how to be my own advocate and at times it is still hard to stand up for myself, but I'm getting there and I know I will get there one day. Maybe by the time I get there, the world will know more empathy and kindness.