...for your sake, I lie.

People are always saying and asking me the same things about my disease. My condition. My unfortunate occurrence. That “really sucky thing” I have. Always the same set of statements, and the same inquisitions.

How do you feel?

Are you doing well?

I’m so glad you’re keeping such a positive outlook!

Are the new medicines working yet?

Your parents must be proud of how you’re handling this.

You are setting an excellent example for other people with your condition!

Do you still experience much pain?

Is today a good day for you?

My question for them: what are you expecting me to say? Do you expect me to say that I am always in pain? Are you expecting me to tell you that yesterday I could barely move? Do you want me to tell you that I’m so tired I could sleep all day, and still be tired?

No. You expect me to pretend that I’m okay. You want to hear that I am just fine and dandy. You expect me to acknowledge that I have good and bad days, and say that fortunately today is a good day for me. And every time you ask me, it’s a good day. You want me to tell you that with every passing moment it gets a little bit easier as I adjust to having a disease I never expected, and never could have predicted. You expect me to protect you, to say that everything is all right; that the support system I have in my family and friends makes my life so much better. You are waiting, for me to answer that I’m doing good. And that is enough for you. You have showed just enough interest in my personal struggle to keep from feeling guilty. And after asking one, maybe two of these questions you will walk away. You will walk away until another pang of guilt washes over, at which point you will find me again and repeat the process. You will walk away before I run out of sweet nothings to say.

You will walk away before I start telling you the truth.

The truth that every moment of my existence is challenged and tested by something that I have no control over. That for more than two years I spend every tiny moment in aching pain. You don’t want me to tell you that the pain NEVER goes away. You don’t want me to say that my wrist braces cannot be secured tight enough to eliminate the constant throbbing anguish of my wrists. You don’t want to hear about how sometimes without the braces my wrists are so fragile that they can’t even support the weight of my own hands. You can’t bear to hear that the pain in my neck prevents me from being able to tip my head back to even take a pill. You don’t want to hear about the searing pain in my elbow and shoulder that prevents me from lifting something as small as a water bottle without using both hands. You aren’t expecting me to tell you how long it takes me to get dressed because my fingers are so weak and tender. Or about how sometimes I can’t sleep through the night because of the pain. You don’t want to know about how embarrassing it is for me to not be able to put on my backpack for school, scoop myself some ice cream, pick myself up off the floor, or open a bottle. You can’t stand to hear that every time I yawn it’s like my jaw is being ripped off my face, only to have it happen again. And again. And again. You don’t want me to tell you that I am not okay. That I am mad at the world for having it so easy. That I am so very angry for having to be put through this. That I hate going through my day in fear of not being able to do something. You don’t want me to tell you that I am afraid to fall asleep, because I am horrified of waking up. Of not knowing how much pain I will be in. Of not being able to get myself out of bed without excruciating pain. Of being so completely incapacitated that all I can do is cry. You don’t want all the terrible details. The 3 different pills. The 3 different injections. The 4 surgeries. The dozens of doctor’s appointments. The complete and utter exhaustion that overwhelms my body multiple times a week, and sometimes everyday. You don’t want to know about the side affects. The hair loss, the insomnia, the risk of infection.

You are terrified of hearing about how this disease affects my life. You are terrified of learning the uncut, unedited version of my relentless physical torture. Because most of all, you are terrified of feeling more guilty. Guilty because no matter what you do, you will never understand the life I am forced to live.

And so, when you approach me I will give the same stock response. I will tell you exactly what you want to hear. I will tell you that the people and doctors around me make it so much easier. I will tell you that there are good days, and bad days, and that today is a good one. When we talk, it’s always a good one. I will say that I am learning how to deal with the disease, so everyday is getting better. I will shield you from what I have to live in. I will shelter you from the horrors of the place I spend every moment of every day. I will protect you from this truth: my life is a living hell. But you can’t bear to hear that, and so, for your sake, I lie.