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Dysautonomia may be an invisible illness, but there’s a lot about it that’s visible if you take the time to really look!

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How much bullshit are stress induced flares? Urgh. Like, “Hey I know you’re insanely stressed, and sobbing nonstop, and so emotionally distraught that you probably want to die to some degree- but let’s just make you hurt and pee like 10x as much, that will make it FUN!” Fucking seriously!?

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“You’re too young to be so sick!”

“You’re too young to be using a mobility aid!”

“Why do you rest so much? You’re so young!”

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If someone doesn’t “seem” disabled to you, maybe it’s because they’ve been forced to develop a huge and complex system of coping mechanisms in order to try and survive in an ableist world. It’s probably that.

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my uterus realizing we aren’t having a baby after building up a lining for three weeks:

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me, a canadian, talking to an american who’s sick or hurt: have you tried—no wait that costs money for you… what about—no no, that costs you money too, doesn’t it? …god, that’s absolutely fucking nonsense, eh? what do they expect you to do??? die????????

americans to me: yes

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Drew the way I have been feeling the past weeks,,, well actually my whole fucking life.

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When I was a teenager with migraines daily and throwing up regularly I was told it was stress from being bullied. Turns out I have a serious heart condition.

When I was in college and had the worst pain of my life in my abdomen I was told it was an ulcer from stress. Turns out my gallbladder was so full of stones they had blocked access to my intestines and I almost died.

When I was still in college and had severe cramping I was told that my periods were exasperated by stress and that I was paranoid. Turns out an ovarian cyst was so large on my ovary it destroyed the organ by literally flattening it like a pancake.

When I was in grad school and having tremors and passing out I was told I had anxiety from stress and referred to a psychologist. Turns out my brain was literally not getting enough oxygen to function from my heart condition.

When I was 25 and my bladder stopped working which did not allow me to pee for days I was told that it was stress and that it was mind over matter to urinate. Turns out the muscles in my pelvic floor are in constant agonizing spasm.

My physical symptoms have been dismissed as manifestations of stress most of my life by both doctors and loved ones causing permanent damage to my body, pain, and loss of quality of life. We need to stop dismissing teenager’s and women’s symptoms as stress and start taking them seriously. Stop dismissing illness as stress simply because of a person’s age, gender, sexuality, ability, race, or socioeconomic status.

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When your doctor asks how you’re doing

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Doctor: List all your medications and dosages.

Me: *weeps*

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Life is like a box of chocolates spoonie edition

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Me @ my joints: please remain in your seats with seatbelts fastened until the vehicle comes to a complete stop

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Being denied accommodations because you don’t look disabled is not a privilege it’s discrimination.

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Before I finally got my POTS diagnosis, someone suggested that I should try hot yoga. If I had tried to exercise in a heated, humid room, I likely would’ve passed out and could’ve injured myself. Suggesting treatments for people’s chronic illnesses is annoying at best and dangerous at worst. If the person is undiagnosed, it’s doubly dangerous to suggest treatments because they may not know all of their symptoms and limits yet. Please don’t give people dietary or fitness advice; I know you’re trying to help, but that’s a doctor’s job. 

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Spoonie wishes for 2018

May our doctors believe us.

May we get that diagnosis.

May we find a medication that works for us.

May find spoons, even when we think we’ve run out.

May our family and friends understand our fight.

May strangers not stare at mobility aids.

Please, add more! Spread the spoonie love! <3

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I hate being asked by abled people how I can live and deal with my pain and conditions, like I’m some sort of inspiration. I don’t have a fucking choice, this is my life. That’s how I live with it, because I don’t have the option to live any other way.