When I encounter new doctors (medical, mental health, etc.) the first question I’m asked after the disclosure of my mental health history is “What is the date of your last hospitalization for mental illness?” I have never been hospitalized due to my various mental illness. Every health care worker I have told this too has the same response. They pause, look up from my chart, and say something along the lines of “Really? Lucky you.”
I guess it is lucky that I’ve never been hospitalized for mental reasons but that’s a really low bar for “lucky”. I know a lot of people are less fortunate than me and I am lucky in that regard. But it isn’t as if my mental health doesn’t have deep consequences for my daily life. I’m 32 years old. Its been two years since I held a job. The longest I ever held a job was four years when I worked on campus while in college. My college was very small and very sheltering. Had I gone to a larger school in a larger town I doubt very highly that I would have graduated. There are many barriers in my life that keep me from holding a regular job but the biggest one is my ability to be at my job on a regular basis.
Some mornings I wake up and can’t get out of bed because I hate myself so much I start to contemplate suicide. Some mornings I’ve woken up so scared of some ominous threat that my brain convinces me is real I cannot leave my house. Sometimes I’m so overwhelmed with various sensory challenges that I can’t process what I’m seeing, can’t understand what I’m hearing, and/or cannot speak. How can anyone be expected to stand behind a register and smile for eight hours when their brain is bombarding them with the idea that they would be better off dead? How can I stock clothing in a store when that seemingly simple task is a game of sensory Russian roulette? How do you even explain that to someone?
“I cannot touch denim because of my autism.”
Well that’s a basic function of the job and not exactly covered by FMLA or other laws. Even diseases like asthma that are covered by FMLA aren’t always covered by FMLA. There are days I literally cannot go outside because it will inhibit my ability to breath. Walking from my house to my car or my car to my job could in fact kill me. These days are not all that common but if the city declares an air quality alert day I cannot go outside. The state is telling people who are sensitive to avoid going outside and that’s me. Its not because I want to be because if there were a magic pill to just make asthma go away I’d do whatever it took to get one. Being able to drown on dry land isn’t exactly a super power. If the pollen and mold counts are too high my asthma shuts off breathing and makes my nose bleed copiously. Imagine having someone ringing up your groceries who is gasping like a fish and actively bleeding. You wouldn’t want that person near your food. Your job would send you home. But you are penalized for it. I once had to call out from work because I was so convinced that the overpass would fall out from under me when I was driving that I had to take so much anti-anxiety medication I wasn’t safe to be behind the wheel of the car.
I have atypical depression that is very resistant to treatment and even when a treatment is working there will be days that it doesn’t. I have generalized anxiety disorder, panic disorder, and obsessive compulsive disorder with chronic intrusive thoughts. I have IBS and at any point my guts will rebel against me. I may be on the toilet for 30 minutes with a 15 minute break between extreme bouts of intestinal cramping and diarrhea. Anyone with IBS-D knows there isn’t any treatment that works. When an attack starts I am simply along for the ride. At the end of this ride is exhaustion, pain, and dehydration. I have asthma. I suffer from unpredictable insomnia. I go to bed at a reasonable hour but I’m still awake at four AM. If I have to leave for a shift at 6am that’s barely two hours of sleep if I even manage to fall asleep. If not I’m going to be working in a complete daze because I cannot function without at least 5 hours of sleep every night. If I get less sleep than that it often triggers my IBS for reasons no one understands. I suffer from chronic headaches that don’t respond to treatment very well. They aren’t traditional migraines but its hard to function when your head feels likes its gone rotten and is ready to split open. I have chronic pain in my joints, particularly in my knees. The medication that helps with the pain renders me unable to operate heavy machinery or even stand without wobbling. I basically act as if I’m drunk and you can’t do that on the job for very long even when the medication you’re taking is legally prescribed to you. I suffer from chronic fatigue. My doctor is currently trying to figure out if I have an autoimmune disorder. So there’s days off for various doctor’s appointments in addition to my appointments with my mental health care team that literally take all day long. And then there’s always my autism which makes dealing with the public very difficult. Retail shops are such sensory nightmares that I can’t even do my own shopping. How can I possibly work in such a place for up to eight hours a day?
So, this is where I’m at. My car broke down completely in December of last year but I’ve been out of work for two years so there’s no money to even buy a junker. I have so many barriers that “normal” employment seems impossible. I would love to go back to school at get a degree in Library Science so I could be a librarian but I need money for school and then I’d have to be able to be at work and not calling out all the time. I’m 32 years old and looking at getting disability benefits because I cannot function normally in society. But I have an above average IQ so even workshops that exist to give people with disabilities a place to work are not an option for me. No oneunderstands what an adult with autism needs or how to help them gain employment.
There is a void ahead of me in which I am simply incapable of existing in “normal” society and living a “normal” life with a “normal” job. Or even any job at all.
So where do we go from here?
*screenshot taken from the manga “3-gatsu no Lion”. I claim no ownership.