Eleanore Vs. Being My Illness

Dear stardust clumps,

Lately I have been stuck thinking about the origin story of Sickly Stardust. Not only my blog alone, but my entire life as a chronically ill person. Momma Rose asked me recently if I remembered when exactly I became ill. I explained to her that while I had been sick since birth, there were many events that unexpectedly threw me into the Upside Down, the worst being when I turned 18.

Right as I was deemed legal I was also deemed a Celiac. I hadn’t known it but the disease was tearing apart my body; I was severely anemic and malnourished, going into anaphylactic shock every three months, fighting to stay awake. When I look back, I was really fighting to do pretty much anything. There are many frustrating parts to getting diagnosed with a disease, the worst of course is actually having a disease. But there are other parts I wasn’t told about when going through a diagnosis. One of the aspects I struggled with the most was telling my friends that I was no longer an average teenager, but had suddenly been forced by my own body to figure out a new way to live.

I was conflicted about who to tell about my diagnosis and how I should go about it. I wondered if any of my friends would truly care, or if they would think, “why is she telling me this?” I considered the fact that since they were all completely average teens, they would have absolutely no idea how to react to one of their friends now being chronically ill. I feared I’d become a social outcast because I could no longer eat  at restaurants, and I at the time couldn’t even fathom sitting with people eating everything that was now dangerous to me. I also worried that because of my lack of health and energy I would quickly fall behind everyone else my age. For a while, I did.

As time went on there was one particular phrase I was met with – “you aren’t your illness”. I came to understand that many times this phrase is used when others have nothing else to say about a difficult health situation. Admittedly I have even heard this phrase in advertisements and from medical workers, all of them hoping to be encouraging. I comprehend that they usually mean those of us who are chronically sick have more to us than sickness. I agree completely with that sentiment, however as I have spent my entire life being chronically ill, I cannot help but think, how could I possibly not be my illness?

I’ll be honest, there are certainly times I struggle to remind myself that my personality encompasses more than my medical history. But every day I wake up in pain, persistently nauseated and fatigued before my day has begun. The pain reminds me chronic illness is very appropriately named; it is chronic, indefinite, everlasting. My illness affects every part of my daily life, my likes an dislikes, and they absolutely affect my personality. Therefore it is impossible for me to truly believe that I am not my illness. I most certainly am my illness, and my illness is me.

Instead of trying to minimize, ignore, or run from it, I have decided to change the narrative entirely. I am my illnesses, and they are me, and you know what? That is completely okay.

A few weeks ago I awoke in the middle of the night to one of my vasovagal episodes which can best be described as feeling like my brain is short circuiting. I started to shake and convulse, the nausea and intense sickness overpowering me. I called for my adoptive mother to bring me water and ice in hopes that I could prevent loss of consciousness. She came with the items I needed and I expected her to walk away and leave me to my misery as so many before her often did. Instead, she knelt beside my bed, held my hand, and helped me through it for the next hour until we were able to stop the shaking and I was able to be slightly confident that I would not pass out.

I don’t enjoy these episodes. In fact, I’ve explained on multiple occasions that they are one of the most dreadful parts of my chronic illness. I wish more than anything that I did not have to endure them for the last 16 years; however, for all my hoping it remains true that these episodes, as well as every aspect of my health, is a part of my life here to stay.

I am strongly against the romanticizing of disability, chronic illness and the suffering that entails being a person like me. However there is a distinction between romanticizing and wanting to change my view of a situation I had no choice but to live. If I can’t choose how healthy my body will be I can at least impact how I think about it.

There is a immense amount of fear, guilt and shame when it comes to chronic illness. Though I am a blunt and transparent person, especially in my blog, it never gets easier to explain to someone that my body doesn’t work as it should. No matter how many times I tell my stories I still fear being misunderstood, minimized, or worse; rejected entirely. I sometimes feel that I am not worthy of the time of others because I seem to be such a difficult anomaly. I worry that I’ll never be deserving the of happiness that everyone else around me seems to find with far more ease than I’ve ever known. I feel like I am too much work, even when I try to make life as simple as possible. I have been convinced by both my self deprecation and the abuse of others that ultimately I am little more than an inconvenience.

Well. Fuck all that. It is time to stop trying to convince myself that I’m not my illnesses . I am my illness, but look what I can do with them. Look how hard I fight, how much I try, how beautiful life can still be even with all that tries to hold me back. It is okay to accept chronic illness, to talk about it, to acknowledge it without awkward silences and bland cliches. I want to be myself, in my entirety.

I have spent the majority of my life wishing myself away, refusing to accept that this was the one life that I have been given for some unknown reasons that the universe never let me in on. Regardless of the reasons that I exist, I am officially  done with self loathing. Human life is not supposed to be convenient; it is supposed to be vibrant in its complexities, negative and positive.

Manic depression’s touching my soul.
I know what I want,
but I just don’t know how to go about getting it.

~Manic Depression- Moon Tooth (Hendrix Cover) 

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One thought on “Eleanore Vs. Being My Illness

  1. You are so gifted with words. I surmise that your limitation and disability left you with words and little else in the way of life tools that you can use to make your life better. As the result, you have become the words themselves. Your writing is beautiful. Thank you for sharing yourself.

    Like

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