Invisible Illness: A Guide to Minding Your Business

I am a disabled human. I live with several invisible illnesses that have no cure. I wake up every morning in pain, like lots of pain. Like a 9 out of 10 is a good day kind of pain. Many of my illnesses affect my memory, and when I’m stressed (which I always am), all my illnesses symptoms come to the surface. I have the short-term memory of a goldfish with brain injuries. I can’t fucking remember anything. I’m having a hard time writing this piece because I keep forgetting how to spell the easiest words. I sit here and repeat the word out loud over and over again trying to pull the image of the letters through the fog that is my brain. This exercise makes my writing take hours.

But the fun doesn’t stop with the pain and the memory issues it comes with the loveliness that is one of my diagnoses; Chronic Fatigue Syndrome (CFS) or what it’s also known as Myalgic Encephalomyelitis (ME), causes extreme fatigue and other shit. I mean I always feel like I haven’t slept, so I walk around like a zombie trying to run the business and get all my writing assignments done. Some days I’m just so tired that I can’t get dressed, or take a shower, I barely can get out of bed to take my medicine. Simple things like going to the bathroom become a herculean task on days like this.

Image From Mollysfund.org/blog [Image of an iceberg with invisible illness symptoms, showing that there is more under the surface than whats initially seen.]

With every month there’s a new weird symptom that disrupts my already new “normal” and sends me back into a cycle of adapting to whatever fuckery my body has in store for me next. A few years back it was the crippling anxiety that comes with Fibromyalgia, I was/am a panicky mess. I get anxious over the dumbest stuff, but I can’t help it. Or the sensitivity to light that came on quickly at 13 years old. I would audibly hiss when I walked into the daylight. In high school, I would wear black hoodies in 100-degree weather, cause the sun literally hurts my skin if it’s exposed for too long. I’m convinced I’m a vampire.

Shit, two weeks ago my eyesight just decided to stop doing the thing. I’ve always worn glasses for my sexy lazy eye, but I have always been able to see relatively well without them. Two weeks ago on a Thursday night that dramatically changed. Basically, my eyes won’t focus anymore, and I can’t really see all that great now. I can’t help but laugh every time some new symptom shows up. It’s like maybe I’m a mutant, and my power is the rapid degeneration of my body. I wouldn’t make it on the X-Men with a power set like this.

If you were to see me walking down the street and I happened to be feeling well enough to feel confident to go outside without any of my mobility aids, you would think there was nothing wrong with me. That is the curse of invisible illnesses. I have parked in disabled parking spots (with my disabled plates and placard clearly displayed) and on many occasions got out of my car to do whatever I was there to do, and have been yelled at and told “you should be ashamed of yourself!” they follow me around the store demanding to know my diagnosis. People leave bitter notes on my car telling me that I’m faking it and that I’m going to hell for taking a disabled parking spot from someone who really needs it.

A note left on the car of a woman in Denver with a daughter that suffers from a rare genetic invisible condition called hypophosphatasia — a chronic, potentially life-threatening metabolic disorder that makes her bones soft and brittle. [Picture of a typed note on white paper]

I was even accused of lying of being disabled recently by a customer of my store. I had a Kickstarter for my comic shop and a customer who is an Army vet was outraged by the fact that I said I am disabled. He felt he knew me because he frequented my establishment. So he posted on secret forums, who have tons of members, that I was a liar, that he knew for a fact that I wasn’t disabled. I then got tons of racist hate mail (I am also a Black Woman) in my store inbox. I confronted the customer, and he denied everything. I had screen shots, and I shared them with him. He then fessed up to his slander of my character and confessed that he didn’t, in fact, know anything about me. This is the stuff I have to deal with. I don’t feel like I owe anyone an explanation of my medical history, and I sure as shit won’t let anyone invalidate my experiences with their ablest beliefs.

I think it’s interesting how people feel entitled enough to claim they know more about your body than you do. That I can frequently be asked for information about my illness by strangers, cause they need receipts so they can go about their fucking business, having nothing to do with my life or know what I have been through personally. It’s an added symptom of having all theses invisible illnesses that I haven’t quite adapted to yet.

I think it’s just people who just like harassing disabled people. It’s annoying because I have enough to deal with, with the garbage health care system, and shit doctors, and racist doctors, and all the medical bills, and rising prices of medication, and the threat of losing said shit healthcare because I am a preexisting condition. Then to deal with shitty people and their shitty perceptions of what disability should be, and what it should look like on top of everything I just mentioned. I’m just not about that life.

A woman by the name of Justine van Den Borne, who suffers from MS (Multiple Sclerosis) received this note on her car. Her response on Facebook: “I am sick of people like yourself abusing me on my good days for using a facility I am entitled to. A disability doesn’t always mean a person has to be wheelchair bound but lucky for you one day I will be.” [Image of a note on a car windshield. Written on a lined piece of paper. There is a visible disabled parking permit in the background]

So maybe next time when you see an able-presenting person getting out of a car parked in a disabled spot (with all the proper placards and plates), you think of this article, of me and then you just keep walking into whatever store or establishment, and mind your business, and let people live.