behind the scenes

You asked me if I’d recently gotten my wisdom teeth out.

It was innocent enough. It wasn’t malicious. It was just an observation. An observation that reminded me of an ugly facade I wear. A simple gesture that proved to me that my struggle was no longer invisible - that it was now obvious that I was different.

I had been living under this falsified reality  that the new medication wasn’t affecting me externally. I thanked my lucky stars that internally, I was receiving only positive results, but I guess all good things have to end somewhere, right?

I’d been sensitive to the changes. I’d noticed the ten pounds I gained, the acne, even the rounding of my face… but I just didn’t want to accept that they made me any less beautiful. My new normal included a speckled moon-like face. It’d taken me so long to finally accept that feeling normal meant giving up looking it.

And it hurt.

When I went prom dress shopping, I was embarrassed to learn that I’d moved up a dress size… Even two, in some dresses. I’d looked in the mirror in those beautiful ball gowns, and I just couldn’t see the beautiful girl that everyone else claimed to see. All I saw - all I see - is my struggle.

My “new normal” is bittersweet. My “new normal” is ugly. My “new normal” is unforgiving. My “new normal” is taking more medication than I ever have before. My “new normal” sucks.   

My “new normal” is grief-induced depression and insecurity that plagues me.

I want to feel normal. I want to look normal. I want to be normal.

I don’t want to be sick. I didn’t ask to be sick. I would never wish this on anyone else.

And I know, this is beyond petty, and I know I’ve begged others to never give up. To look their burden right in the face and claim victory, but it’s harder than I ever could’ve fathomed. It is so hard to give up everything that you were so proud of, all while trying to accept being diagnosed with something so ugly and unforgiving and defeating.

I am trying so hard to be brave but it is so difficult right now. My hair breaks so easily that I am afraid to put any heat to it. My face breaks out so badly that I’ve been prescribed antibiotics to clear it up. My feet turn purple when they get too cold. I can't be outside in the heat in the sun because I have to be afraid of flare ups. I can hardly sleep, and when I do, I have dreams about dying because I’m suppressing my fear when I’m awake.

It is so difficult to tell all of my doctors about this stupid diagnosis because everyone pities me. I now have the stupid disease that everyone thanked God I didn’t have. I have the disease I was told to feel lucky that I “didn’t have”. I have to go to a doctor for the rest of my life, every three months to receive blood work so that I can be sure I’m only feeling it in my bones and that it's not destroying my organs. I have a 9 o'clock bedtime right now because my body can’t handle the “new normal” energy it has.

I’m seventeen years old and I can’t even sleep in my own bedroom because I’m too scared of being alone. My “new normal”, my “sickness”, everything that I now am literally sucks. I don't want to be me.

I lied when I said I was brave. I am not strong. I am so weak right now and I am so afraid. I am more afraid than I’ve ever been before. Everyone has told me to move on, but I just can’t. I’m in the middle of a hurricane that is never-ending. I’m a ticking time bomb. 

I am so afraid to die. I want to be normal, I want to live a carefree life. I want to be normal.

This was me before I was diagnosed. I was so proud of everything I was. I loved my hair, my smile, my dimples, even sometimes the pale nature of my skin. I was proud to be that girl.

And now, I just wish I was as beautiful as before. 

Much love,

Jess