What I Want to Say to the 'Healthy World' About My Chronic Illness

Surprise! I actually don’t hate you. In fact, I love you. I don’t envy you. Yes, of course I wish I were in your shoes — but then again, the grass is always greener on the other side of the fence. I know you don’t understand my situation, and I know this can feel as hopeless for you as it does for me. But please understand some things.

Dear “Healthy World”: This is what I want you to know but never tell you.

Please don’t laugh.

My illness is hard and I know you don’t understand, but I don’t find it amusing that at 16 years old I don’t know my multiplication facts while my friends are in trigonometry. I don’t find it funny that I’m having a tic that looks like I’m clapping. I know you mean well and are trying to make light of a situation that you do not understand, but please don’t.

Please ask questions.

Don’t be afraid of me. I don’t bite. I know that you asking questions means that you care enough to want to understand my illness, and that means a lot to me. Don’t be afraid to ask about the bandage on my cheek with a yellow tube sticking out, or the hospital mask at church, or the noise I’m making, or the tie-dye IV sleeve on my arm in the summertime. If I don’t want to talk about it, I’ll tell you. But most of the time, I don’t mind answering questions.

Please be there.

Buy those flowers. Send that text to check on me. Don’t be afraid to call me. Maybe I’m resting, but my phone has “Do Not Disturb” for a reason. If I’m not up for talking, I won’t answer. But it will mean a lot to me that you tried. Don’t be afraid to try to arrange a time to meet. Please, please still invite me places. How I long for the days when I was one of you and my weekends were filled with partying instead of catching up on overdue homework and emergency room trips. I know sometimes it can be hard for you because I can never give a definitive answer. For that, I am truly sorry. But please know I am trying my best and I do want to come, and the fact that you thought of me will make my day.

Please don’t stare.

I do notice. I do have feelings. I am still a person just like you. I still feel pain. Please don’t stare at things that stand out. I know it can be hard not to stare at things you don’t understand, but please try. Again, ask those questions. Maybe it won’t seem so foreign if you ask and try to understand what is going on inside of me.

I don’t want your miracle cure… 

…that worked perfectly for your cousin’s neighbor’s dog’s sister’s father’s grandmother’s friend’s neighbor’s aunt. I want a friend. I want a shoulder to cry on when I feel like the sky is falling and the weight of the whole world is on my chest. I want someone who will be there. I want someone who will ask if I’m up for a visit when I’m sitting in the hospital unable to speak. I know I’m not always the easiest company, but please try to be patient with me. If you remember how I was before I got sick, please remember that I’m still in there and I want nothing more than to go back to how life was for me then.

I know I can be hard to deal with sometimes. Thank you for trying. I love you.

Sincerely,

A chronically ill teen

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.