Illness sucks.
Disease sucks.
I get the metaphysical aspect of illness as a messenger and a teacher. And, today I’m allowing myself to not be so fucking optimistic for once. I’m allowing myself to be vulnerable and seen about the shitty parts that come from dealing with pain on a daily basis.
We all know how it affects our life when an acute illness makes its way into our body. When someone comes down with a cold or a flu, we understand that people need to rest to give their body time to recuperate and come back to balance.
But chronic illness.. That’s a different story. And an invisible chronic illness is a whole different world in and of itself.
Many of you don’t know the details of what I’ve gone through the last 13 years since I started to really get sick. Most of you don’t know that in college, I was so sick at one point that the only way I was able to make it to class was to get a handicapped parking sticker that would allow me to drive onto campus while my fellow students were walking, riding bikes, or taking the bus.
It was humiliating to explain to my classmates that I needed a doctor’s order just to be able to make it to school. It tore into my sense of self in a way that I’ve never quite experienced before or after. It was exhausting to explain to people exactly **why** I had special permissions, because too them, “Well, you look fine.."
Most of you see me as bubbly, spunky, light filled Aurianna (or Casie, if you still choose to call me that).. You see the love that pours out of me. You see my passion for my mission. You see me creating. You see me traveling. You see me living my life.
What very few people see is the behind the scenes part of me living my life-- a life that was created out of desperation when at 18 years old I was told by a doctor that I should enjoy my life while I can because there’s no way to tell how fast the illness will progress or to what extent; a life that became a necessity when at 20 years old I was told I was potentially going into kidney failure and would need to take medication for the rest of my life; a life that is beautiful and magnificent in so many ways, and also extremely painful in so many others.
What you don’t see is the anger I felt last night at my body for betraying me as a close friend invited me to hang out with one of the most famous fashion photographers in NYC but I couldn’t because I was tending to a migraine and needed to sleep it off.
What you don’t see are the tears I cried as I screamed at God asking again and again, “Why me?! What did I do to deserve this? Why is nothing I’m doing working the way it does for others?!"
What you don’t see are the phone calls I make to friends and mentors when I feel myself slipping into depression over the never-ending pain to get some support before the darkness starts to consume me.
What you don’t see is the fact that my connective tissues are so weak that they don’t keep my bones in alignment, so I’m continually visiting chiropractors and getting massages to keep things where they should be, and when I can’t afford to do that, I walk around in a body that is terribly misaligned. What you don’t see is every time I visit a new chiropractor they ask what kind of accident I was in, and when I tell them none, they are shocked. What you don’t see is my newest chiropractor telling me last week that I have early stages of arthritis starting in my lower neck and telling me that I better come in once a week to keep things in alignment or else I’ll pay for it for the rest of my life..
What you don’t see is the irritable bowel syndrome that basically runs my life because every single thing I put in my mouth affects it in one way or another. What you don’t see is how I carefully plan my meals so that I always have food around to keep my blood sugar from getting too low and so that I don’t run the risk of eating something that doesn’t agree with my body. What you don’t see is the internal struggle I deal with when friends want to go out and I know there’s nothing on the menu I can eat, but sometimes I eat it anyways because I so desperately don’t want to be seen as the “sick girl” anymore, and then I get to deal with the effects of that choice for a week.
What you don’t see is that every month when my menstrual cycle comes, I wait with anxiety to see what level of pain I’ll be in. What you don’t see is that two months ago I almost passed out while shopping because of the pain. What you don’t see are the breast cysts that come every month a week before my period that makes it painful to wear a bra.
What you don’t see are the hours upon hours upon hours I’ve spent researching natural healing methods. What you don’t see are the nights I spend doing castor oil packs, taking epsom salt baths, doing yoni steams, or lying on a heating pad, all just to keep things in balance.
What you don’t see is the tens of thousands of dollars me, my family, and close friends have spent to help me get to where I am now, health wise.
What you don't see is that most of my travels the last few years haven't been leisurely, but a part of my healing journey. What you may not know is that I spent 9 months of the time I lived in Europe undergoing intensive treatments for Lyme that are not available in the US, and my time in the jungle was an extension of that treatment.
What you don’t see is me deciding between going out with friends and enjoying my life or buying supplements for the month. What you don’t see are the blood tests, the doctor’s visits, and the dealings with insurance companies.
What you don’t see is the moments of decision every time a new symptom pops up and I have to weigh my options about spending the money to go in and get it checked out or waiting to see if my natural remedies can take care of it. What you don’t see is the deep rooted terror that comes with potentially making the wrong choice— that one day I may wait to deal with something, thinking it’s just another thing I need to wait out, and perhaps that being the one thing that couldn’t wait….
What you don’t see is every time I visit a new doctor, the fear that comes with sharing the healing path I’ve chosen. Psychedelics and shamanism as a path for healing? Here’s an order to see a therapist...
What you don’t see is the internal struggle I deal with when people ask me to explain what exactly is wrong.. How do I possibly describe to most people that while yes, I did (do?) have Lyme disease and other co-infections, my shamanic journey’s have showed me that it’s so much more than that? I know now that it’s ancestral, having been passed down my maternal line; that it’s trauma energy still stored in the cells of my body from the abuse I experienced as a teenager; that it’s because I’m highly empathic which makes me like an energetic sponge, so I take on the energies from the world around me, including ones from my parents that I’m still working through; that every time I go out into the world I have to psychically protect myself to not pick up more, but that I’m not so great at it yet and I still pick things up; that I’m highly sensitive to EMF; that it’s the karmic path my soul chose; that it’s still here because unconsciously my identity has become twisted in being ill, and that every moment of every day I’m having to rewrite the programming in my mind to overcome this?
What you don’t see is that while on one hand I’m grateful to everything I’ve learned through having an invisible chronic illness, it sucks. It really fucking sucks. And some days, all I can do is cry my eyes out to ease the weight that I carry around in my heart, trusting that tomorrow will be lighter and I can get back to living..
