Being chronically sick without a diagnosis is a fucking nightmare...
I’ve been sick for years and about once a year I muster up the strength to see a Dr and ask for help. Or I’m forced to because I’m unable to work or have had migraine/nausea/unable to eat for more than a few days in a row. This time I have a sliver of hope and it’s unleashed a waterfall of confused emotions. My blood test showed that I have hypercalcemia and I’m waiting on results for a PTH test to see if I potentially have parathyroid tumors. I feel like I’m dreaming. Could I be so lucky to have a medically recognized curable condition that’s not hyperstigmatized?
It’s emotional because despite knowing I am objectively physically sick, I’ve always had this strong feeling it’s my fault. Like I can control it if I just try the right diet.Take the right supplement. If I just think the right thoughts. Take psychiatric medication. Meditate. Exercise. Acupuncture.Sobriety. Microdose. Wear compression socks. Drink saltwater. Drink vinegar. Stuff my face with Kratom and Akuamma Seed.
But nothing worked so I designed my life around being sick. I stopped trying to have normal jobs because it’s unbearable to push though some days and it’s devastating to call out and inconvenience my coworkers, disappoint the managers that I wooed in interviews just weeks ago. What can I say to them? “Sorry I can’t come in this week, I’ve had these mysterious vague debilitating symptoms for years and some days I can’t leave bed”. I work as a webcam model now. I work from my bed. I make my own hours, I make 10x more money, I can live comfortably working 8 hours a week. But sometimes, especially lately, I can’t even do that and I hate myself for it.
I’m good at “performing health” for other people when I’m at my baseline level of sickness. If I’m unable to perform health on any given day, I will disappear so nobody sees. I’m not being entirely inauthentic, I’m just turning on a switch inside of me and doing everything in my power to conceal my physical discomfort. I can tap into my social mania for a few hours at a time and then it starts to slip away and my head gets heavier and heavier,my skin is tingling, I can’t think, my body is just screaming at me to please lie down, preferably near a bucket and with a cold rag over my eyes. I’m so hungry but I can’t eat. I’m insatiably thirsty. I feel weaker and weaker.
Falling apart physically in public is embarrassing, especially without any real vocabulary to convey my experience. I remember being a cashier at Stop and Shop, I was passing out holding myself up on the register, sweating, shaking. It took everything in me to cave and ask my manager if I could leave early because “I’m sick”. She said no.
It’s like having 2 broken legs and everyone seems to think if you just keep walking on them, you'll eventually feel better. You go to a Dr and they tell you your legs are not broken and it’s all in your head. So you keep trying to walk, hoping they'll just mend themselves back together. Some days you can wobble around for hours with a smile on your face. Then you go home and pay the price for the next few days or weeks.
I can’t allow myself to fully feel the weight of the situation. The years I’ve spent in bed. How close I’ve come to death by self-medicating. Endure. Endure. Endure. My mantra. Do whatever it takes to get better. In some ways I feel like my time sick in bed has been a harvest of sorts. I’ve been harvesting information. I’ve been harvesting pain. I’ve been harvesting perspective and gratitude.
I’m skilled at making the most of my sick days. I hold my stuffed animals closely. I feel the warmth and unconditional love of my dog curled up next to my leg. I can feel the weight of his little face resting on my shin. I wear luxurious pajamas and swaddle myself in my pink Minnie Mouse blanket. I hear the relaxing hum of my fish tanks and fans. I enjoy a romantic candle lit date with The Bachelor on Hulu.
I try not to beat myself up. One time I was tripping on 4AcoDMT and I was able to leave my body and view myself as someone else. In that moment I knew for a FACT that my constant negative thoughts were just simply not reality-based. They were a false narrative that felt true. And I’ve held on to that fact, it anchors me from getting swept away by self-hatred.
In some ways, I am very lucky. Living a normal life was never an option. I’m not remotely bound by the expectations that come with a conventional life. I have to invent a life from scratch. I have to recalibrate every day. I am free in a way that most people will never understand.
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