When people hear that you’re sick the assumption start flowing in.
“Oh you can do art so that means that you can work.”
“You seemed fine when I see you so you can’t be that sick.”
“You don’t wear your braces out all of the time so your joints aren’t that bad.”
There are countless things that people say to you when you are dealing with chronic illness and they are still healthy. People mean well and are unsure of what to say to someone who is chronically ill.
People form their own opinions. Whether these people are older than us or younger than us or the same ages us. Sometimes ignorance seems to be the only thing that people can relate to. Being ignorant about my illness is not going to help me. It all comes down to your denial about me being sick or you just not believing me.
Recently in a fairly popular tv show there was a scene where two girls did something nice for a young girl with chronic fatigue syndrome. The two girls later saw the girl playing volley ball and confronted her about it. Turned out the girl with chronic fatigue syndrome had a healthy twin. The girls then apologized to the young girl with chronic fatigue syndrome. This did shed a little light on the chronically ill and implied there are no good days only bad days. In my mind it misrepresents chronic illness, because we do have good days they maybe few and far between but they exist. We should never be mocked or condemned for doing something for ourselves on a good day.
It’s extremely frustrating to have to carry around a black folder with me that has countless information in it for other doctor should I end up in the ER and need treatment. I have to carry and take medications on a regular basis.
I feel like I’m a jerk when I tell people not to use scented products around me sometimes they don’t bother me but most of the time they do.
Then I have people commenting on why do I have a tattoo why do I have died hair. I’m sorry what part of my life do you think you have full control over. Am I supposed to put everything aside that I want to be or that I want to experience for example having red hair or something that I’ve always wanted to have I’m not allowed to do that because you think I’m sick. Which I am, yes I am sick. But I’m not gonna live in some sort of self-pity cage and be depressed about everything all of the time because that’s not who I am. I’m going to try my best to do things I want to do and thus the reason I have been working on my bucket list things which I have explained before in other blog post that those things are very simple.
Dying my hair was a huge bucket list thing for me. A friend of mine dyed it for me and I am extremely grateful to her and I love it and it’s something I wanted to do it for me.
I find it ridiculous in my opinion when I am dealing with life-threatening diseases that someone tries to parent me, by discouraging me from living.
I know my disease and what they are doing to me. Stop telling me what to do, because you do not have my diseases, nor are you my parent. You also do not have the education Doctors do.
I am not giving up on myself. What does me not giving up on myself look like? Doing things I love. Trying things I wanted to always try, learning things I was wanted to learn in the time period that I have left. Whatever the amount time that is whether it’s a week or another 10 to 50 years no one knows. Point being I shouldn’t have to explain myself nor should I have to justify anything that I do because it is my life you don’t justify everything that you do.
So get off my back, back up and deal with your own crap and stop trying to parent to me. Stop telling me I’m wrong. Stop telling me I don’t know how to take care of myself.
I’m doing the best I can for myself.
Take care of you fellow rare and chronic illness fighters. Living life when your sick should not be something you have to justify. Be happy while you can, relish in life on your good days. Be a free spirit, be you, you shine brighter when your true to yourself.
PS I will leave you with these photos of my Alice In Wonderland Cosplay enjoy.