Some days I wish it wasn't invisible.
I wish people understood what it's like to be sick but not visible. I wish they understood that somedays I simply cannot walk even though I look perfectly fine. That some days laughing hurts, and somedays I fear for my life.
My disease is one in a billion. I'm 16. If my disease was visible maybe that would help. But I'm sick. And it's invisible. I'm 16 all I want is to be healthy and free to do what I want with my life. But that's not a choice I have.
I am 16 sick and invisible to the rest of the world. And the one thing I want is to be healthy and to be visible and to be heard.
@Sagesdream
I hear you. Being sick has it's own challenges and then there are the others put upon ourselves because not everyone understands. There is a good community who does get it though! Google "but you don't look sick" or check out some posts on https://themighty.com/
There are also many people here dealing with similar issues, you could likely find a listener who understands if you wanted to connect to one.
I've also found it helpful to connect to groups related to my condition. With the rarity of yours, you might be able to find one the groups similar things together. For example, I'm in an online primary immunodeficiency group.
You likely can't change being sick, but it is possible to get a platform where you are seen and heard if that's something that you want.
@AffyAvo thank you for your reply I know all about "but you don't look sick" and it's quite lovely but it's still exhausting in day to day life to constantly have to explain this is what I have this is what it does, it takes spoons just to explain. But thank you very much for replying! It's good to know I'm not alone!
@Sagesdream Wow i'm so sorry you have to deal with all that, especially with being so young. I really hope you can cope with this feelings. I really feel for you, even though i have never been in your position before. I hope these feelings go away soon 
@Sagesdream
I feel you. I want to wear a placard saying all of my health conditions and how they make me feel so everyone can see and then be a bit more caring.
I want to be invisible, is the best escape.
@Sagesdream I just want to say that you are so incredibly strong. The fact that you drag through life with the extensive pain you're experiencing is so underrated. You're incredibly strong, you don't deserve this.. We're all here for you.
You are not alone. Im 22 and my disease prevented me from getting a job after nursing school. Its invisible, no one sees how hard I have to struggle everyday just to get out of bed and chug all those pills. Everyone sees me sitting here, slightly sleepy, still dressed up and polite. their mentality is if you can speak you can work. They dont know how often i struggle remembering the words through the brain fog. I just wish people didnt make assumptions or suggestions about diseases they know nothing about.
