I haven’t updated my blog in, well, too long. I think it has been due to an assortment of reasons… The fact that my condition has and is progressing in a horrible sort of way. That I am too drained, too tired, too dead inside to do much of anything despite what the up kept image suggests on my Instagram. The fact that it is a struggle for me to articulate my thoughts or keep up in a conversation leaving me feeling lost in the background until I end up retreating altogether.
However I am, on the clear days, going to write anyway because I believe very strongly that I deserve to be heard, that the battles I am fighting and the life I have been given need to be communicated so that maybe one day I’ll get to live in a world that isn’t so disturbed by the sight of broken bodies and no longer shies away from the discomfort that comes with conversing about illness’ ugly truths.
Two years ago an ER doctor refused to do any further testing and told me that my sudden pain and my decreasing health was all in my head, but here I am still in very real pain, battling some very real illnesses.
A year and a half ago I lost some of the people I considered to be my closest friends because they could not understand the ailment that had stolen my once healthy body and continuously battered my overwhelmed and grieving mind or the horrific side effects that changed me forever.
A year ago I found myself screaming into the void that is our healthcare system to find help for my rare diseases with nothing but radio silence echoing back towards me.
Six months ago I sat at the Mayo Clinic excited for all the resources they could offer me, but instead I was greeted by a preoccupied doctor who jetted off to Florida in the midst of my stay. I left broken-hearted with a massive bill that my family had to pay out-of-pocket.
A few months ago someone I trusted and loved told me that I was faking. We haven’t spoken since.
A week ago I got called an attention seeker for publicly taking the meds that allow me to function. I received the same sort of reaction for sharing my medical journey online.
The other day, some of my own family members made fun of my short, fuzzy hair that is growing. Little did they know I had been losing sizable chunks, clogging the drain each time I showered before I made the decision to shave my head to raise money in honor of another little fighter who resides on the west side of my state. Ellie Walton is 3 years old, had 17 surgeries and has been through more than any toddler should ever have to.
Last night I cried for hours to my mother because there are days when the pain of living the life I do seems never-ending and lonely. Because watching all of my friends graduate and move on into their lives with the gift of health was, for a minute, more than I could bear. I cried for my cyst covered kidneys, my endless pain, the constant infections, insurance coverage denials, my weakening muscles, failing digestive system and lack of treatment. I cried because I am 22 and I peed my pants in public the other day due to my constant muscle spasms. I cried for my past life and my dreams that were lost with it, but I also cried for my future because what will I do? How will I support myself? Who will take care of me?
I don’t want to live in a world that turns their heads from the lives that so many are forced to live. I shouldn’t be made to feel ashamed or less than or like a burden for needing help or talking about my struggles. Illness isn’t always smiles, life lessons and happy endings. It’s also full of humiliation, loss and hopelessness. It may never be normal, but it can be accepted because when it comes down to it… My truth, even the ugly parts, shouldn’t be taboo.