[050423] Deadpool, A Ripoff

on chronic pain and chronic idiocy

Hello Internet,

The last installment of this newsletter was comprised of a beautiful (read: angry) reflection (read: rant) on Western media coverage of the KUHP, which brought me unexpected Substack fame. (What I mean to say is that I got forty likes, and I can’t pretend that those likes didn’t make me a little giddy!) Thank you for reading my absurd indignation at the world.

Giddiness at the validation of my thoughts aside, I made this newsletter with the aim of writing what I want, not just ranting about social issues whenever I get riled up. Sure, I like writing about all that now and then, but sometimes I get so sick of writing things that have to contribute substantially to some sort of larger discourse (which, huh, would be whole interesting post in itself…). Truth is, sometimes I just want to write silly little pieces that are just that — silly and little.

This is to say, I wrote a creative semi non-fiction piece on my autoimmune condition last year that I don’t entirely despise, and I hope you don’t despise it either. Read it on my website for a prettier background.

See you on the other side,

Faye S.

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Deadpool (A Ripoff)

It’s only the first semester of my sophomore year in college when Dr. Elder tells me that staying alive will cost me an extra $72,000 per year. The too-happy painting of Ms. Frizzle laughs cruelly at me from behind him, and one of her frozen students — Arnold, the curly-haired worrier — points at me accusingly. 

“Tremfya costs $12,000 a dose, but I’ve heard excellent things about it! You take one shot every two months and the results are almost miraculous,” Dr. Elder says. He’s excited, I can tell. Then he blinks and reaches for the chart on his desk, “I’m getting ahead of myself, aren’t I? How’s your pain?”

He pushes a laminated blue sheet to me. It’s the Rate My Pain chart. Ten bright yellow emojis in terrible quality stare back at me, labeled one to ten. One has a smile so big it must hurt, and Six has a squiggly line for a mouth. I think Ten is trying to hold in vomit. The chart never made sense to me — psoriasis doesn’t cause nausea, so I don’t know why I’d ever pick Ten. 

I shrug. Today is a six. This month was a seven, probably. Maybe eight. It’s hard to tell, with chronic pain. Dr. Elder nods and jots something down in his notebook. 

“New patches?” He asks. 

I show him four on my back, two on my left calf, and one on the nape of my neck. He hums.

“Joint pain?”

“It comes and goes,” I say. I lift up my hand and curl it into an awkward fist to show him. 

He nods again. Writes something else down. That was the last scripted question. Dr. Elder shifts, then sets down his notebook of illegible scrawls. Looks up and gives me a smile.

“Alright, DP! What are our thoughts about Tremfya?”

Dr. Elder has called me DP since I was fourteen years old. It’s short for Deadpool. He’d made the comparison when the patches across my face had gotten especially bad. I think the sentiment was that my autoimmune disease was like a superpower because I regenerated excess skin cells at an accelerated rate. 

“You can change your skin so quickly! Like a reptile! No, like Deadpool! What do you think, DP!” 

Dr. Elder is the type of person to speak in exclamation points. Even his questions are framed in exclamation points.

(Pro-tip: comparing a fourteen year old to pre-Ryan Reynolds Deadpool is not a good idea.)

It’s funny that I never realized how ugly my reptile skin was. Truthfully, it never crossed my mind to feel insecure about the patches covering my forearms and elbows. I’d argue I was rather preoccupied by the debilitating pain I felt whenever I woke up to bleeding scales and joint pain. 

Only in university did the aesthetics of psoriasis begin to bother me. The patch that had long stayed hidden in my hairline began inching forward, aggressively colonizing my entire forehead in a matter of weeks. I tried hiding it with bangs, then hoodies, then hats. Some days are worse than others. 

Then, as if the chronic pain and chronic fatigue isn’t enough, I’ve got to deal with chronic idiocy in the form of people who think they’re so special that they can cure me because of a post they saw on Facebook. It all goes the same.

“What’s wrong with your skin?” Someone will ask.

(Alternatively, “That’s a terrible sunburn!” and on one memorable occasion, “Is that herpes?”)

“Oh, I have an autoimmune disease called psoriasis!” I will answer, while desperately hoping they’ll let the conversation die there. Which, predictably, they won’t, and they’ll give me a myriad of advice on how to cure my incurable disease. It’ll be tomatoes or yoga or sniffing an obscure and expensive herb (which they’ll then proceed to offer).  

It’s like a fun little choose-your-own-adventure game, except you don’t choose your own adventure and it’s not fun or little. And it’s not really an adventure.

I’ll smile, tell them, yes, I have tried that, I’m sick, I’m desperate to get better, I have skin like the underside of a rat, of course I’ve tried everything. 

I’ve tried sitting in buckets of tomato paste and drinking raw coconut oil and wrapping my stupid arms in cling wrap for hours on end. You think you’re disgusted by my skin? 

But I can’t say that, because it’s rude, because they mean well, because it’s not about me, even though I think it should definitely be about me. 

So then they’ll launch into an anecdote about their acquaintance’s sister’s cousins’ dog’s friend’s owner’s grandma who had eczema. What do they even want me to say?

I guess it’s nice that they’re trying to make nice with the diseased kid. I’ll let Santa know to put you on the Nice List, buddy. Stop talking to me. 

I say I’ll just listen to the doctors, but. Well. I’ve been on and off medication for years, topicals and pills and almost-injections that make my brain chemicals all funky. Sometimes I wonder whether the chronic pain and fatigue is more from my disease or my medication. Sometimes I wonder if I want to kill myself because I want to kill myself or if I can blame the drugs instead. Or maybe it’s both.

Dr. Elder is looking at me, waiting for me to talk. I zone out sometimes.

“I feel like a test subject,” I say. I didn’t mean to say that — the truth.

Dr. Elder startles. He’s old, I shouldn’t startle him like that. No, wait. He’s an elder. That’s better. 

“DP, why’s that?” The wrinkles on his forehead deepen as he leans in closer, like old grandad worms bunched together in their old grandad worm nursing home. He’d distressed by the very idea, but I can’t understand why — he’s the one who prescribed me at least twenty-three different types of medication over the past few years.

“Nothing works,” I tell him, “And when they do, they only work for a few months before everything gets worse.” 

“Well there’s no actual cure, and we want to make sure you don’t suffer from topical steroid addiction,” he says carefully. I can tell he’s thinking very hard about what I said. “We’re all just trying to see what works on you!”

I nod. An addiction too! A package deal! How exciting. I wonder if any muscles will come in. Probably not, it’s a different type of steroid, and I never get the good parts of these deals. Dr. Elder wants to talk some more, but I don’t (because he’s elder) so I ask him about Tremfya again.

“People get results in under a month!” He’s bounced back like nothing happened. He sounds like an old television advertisement. 

I don’t know how to tell him that it feels weak, somehow, to get Tremfya for aesthetic reasons. I spent all of high school being so brave, what happened? Some days I can’t leave my room or else I’ll break down into tears. Getting Tremfya would validate that, but I’m a bad bitch or whatever, so Tremfya can eat my shit. And your shit. Just, everyone’s shit. 

My 30 minutes with Dr. Elder ends in nothing conclusive. As if it has ever ended in anything conclusive.

He sends me home with an ugly mint green pouch labeled TREMFYA that has information inside. It’s filled with promises I struggle to believe, and a warning that says only a 2% chance of immediate death! or something. I’m kidding. 

It’s just a little sentence on the test subjects: Subjects were predominantly men and white, with a mean age of 44 and a mean weight of 90kg. 

Can’t change much, but hey – maybe gaining thirty more kilograms will increase the chances of Tremfya’s success on me. Whatever. 

It’s sort of ridiculous anyway, to pay for these stupid injections. I’ve lived alright for twenty years. And Tremfya is a stupid name.

Dr. Elder won’t be pleased, he thinks I don’t take psoriasis seriously enough. My parents think the same, but I don’t think they understand that I have to treat my psoriasis this way, or else I’ll combust. 

They always look at me like I should be crying myself to sleep because of my stupid skin (I do, but that’s none of their business). It’s just skin, that’s what I want to learn. I’m more than my skin, and I’m more than their stupid biologics. Affirmations that sound like they should be in bright pink and taped on my college dorm room.

Look, I get a free Deadpool makeup out of all this. Who am I to complain?

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