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Mu Satach

Chronic illness is a horribly interesting thing...

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it's been about 2 years since I've been diagnosed with the illness I shall call Voldemort... or "the it that shall not be named." I'm still trying to figure out what to think about it. "HA!" ( I find that statement ironic AND amusing... for reasons I'm not ready to share, even in this little corner of the web that only close strangers will read.)

Which brings me to my current conundrum. I don't want anyone to know about the illness/disease, yet I have to express myself regarding what I'm dealing with on a day to day basis. It has become something that I think about everyday. Something I have to manage everyday. Something I have to focus on controlling everyday. And I have very few people I can talk to about it.

I've thought about and have written about it in my journal. But there is something in me that craves putting my thoughts out into the abyss of the internet, and yet the fear, the stigma, the shame of the illness prevents me from being bold.

So here I am, in the most comfortable corner of the web, a place where I found my internet voice, a place I was heard (be it mostly about Star Wars) a place where my disembodied thoughts call home. A place that I am going to cautiously step out a bit and test the waters of my thoughts in front of a small audience of those who may or may not be interested in the musing of an isolated nerd.

I will finish this thought round with a bit about Voldemort. It is genetic in nature, it is biological in it's manifestation, and with the proper cocktail of drugs mostly controllable. It is embarrassing, it is humiliating, it is life altering and life threatening. I will live out the rest of my life with it's darkness looming over everything I do and must not let on to anyone that there is anything wrong. Voldemort is easy enough to hide on a daily basis, provided I keep a vigilant watch over everything I do. And that makes it all the more insidious and isolating.

Everyday I put on a smile, I go about my business, I make conversation with people, I talk with my friends and loved ones. And occasionally I can mention my thoughts on how things are going to those closest to me who know of Voldemort. Yet even they never ask, "how are you doing?" When I talk they become uncomfortable. There is no language for them to use for love and support because even they with their love and care the first things you think about with Voldemort is to shun, to ignore to belittle, to deny it's existence.

How do I know this? Because that is what I thought of it myself for so very long. A personal weakness in some to be conquered, a falsehood in others to be despised. And if I'm truly honest I still believe that even though the research I have been reading is telling me that it's not a personal failing. It feels like a personal failing. I have failed. I was not strong. I was not vigilant. So the enemy invaded the castle of my soul and has taken up residence and now can not be vanquished, only contained, quarantined, locked down, and continually watched to prevent further contamination. Because of the fear, the everlasting fear that it will get out, it will destroy me, it will take all I hold dear and demolish it before my very eyes and I will be helpless to stop it.

These are the things I think about. The things my family can not bear to hear. The things that overwhelm my closest friends. The things I have to express and so I've chosen to start here. William Faulkner said, “If a story is in you, it has to come out.”

If I don't start letting my story out, it will kill me.

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  1. Lilaena De'Ville's Avatar

    My sister has EDS and so I have some understanding of chronic illnesses and how hard they are. Much love.
  2. Mu Satach's Avatar
    I'm sorry to hear that. I wish her well.