I heard someone recently say that one of the differences between being queer and being disabled is that with being disabled one doesn’t necessarily have to come out to people and that one doesn’t risk losing family support; so I wanted to put this out there: I’m both and I’ve done both.
*My relationship with my mom is very complex, so no judgment, I love her very much and I am always optimistic that our relationship can improve, I just want people to know how this narrative can go down.
I came out as queer to my mom years ago and she did not take it very well, she yelled at me, sobbed, called me names, kept her distance for a while, asked me to not tell anyone else (stay closeted). She made me feel a lot of shame, she made gag noises whenever there was gay PDA on a TV screen, lots of passive aggressive bullying. She was not accepting, and it’s still something she is working through, it has gotten better though.
A few years ago I started progressively losing abilities and becoming increasingly symptomatic of Ehlers-Danlos Syndrome. Slowly my pain levels became more consistent and I started using a cane to be mobile, then a wheelchair, now that my arm joints have become too lax, need a power chair. In between all that, doctors had no idea what was going on and ultimately I diagnosed myself (in my head) before I got the official chromosome results from my geneticist.
Being open online about an invisible illness invites a lot of skeptics to do as they will and make accusations based on their ignorance. Being in public, same thing, because of the way I look people are in disbelief that I am sick; they approach me and demand my diagnosis in public, I’ve been told I was going to hell for using a power shopping cart in a grocery store, bleh, people suck. (Stop approaching people just because they don’t “look” disabled to you)
I literally have the blood test results in my hands, in print, and I CHAMP my way through daily epic symptoms… My mom won’t accept it.
I had to come out to my mom as sick. And honestly, her reaction was bigger and more hurtful than when I came out as queer. And it is so tough, existing in a world that attacks me because they might not believe that I am sick and then to have my mom be in denial, literally tonight she said, “I refuse to believe that you are in pain all the time”
Sorry, to let you all know, yes, it’s all the time, pain is as consistent as a heart beat, if I’m conscious, I am in pain. My feet feel a stabbing pain as though they were trapped in blocks of ice, my back feels like a piece of glass is lodged in it, my muscles are cramped from the extra work they try to do to compensate for my weak joints.
My mom talks about me as though my illness isn’t real and every day is not a battle.
If I’m struck with a narcoleptic episode that knocks me out for 18 hrs, if I can’t be around harsh chemicals, or use my arms and legs to pressure clean, if I can’t move from the bed to even feed myself because the pain levels are too high that day, I’m “LAZY”.
Parents don’t accept their kids’ disabilities all the time, my experience is not an isolated one, and some of us, do have to come out to our parents as disabled. They don’t always accept it. We don’t always have their support.
Do not mistake yourself for a garden or a muse or a promise or a victim or a snack. You are a woman, skin and bones, veins and nerves, hair and sweat. You are not made of metaphors, not apologies, not excuses.
almost cries when her ice cream falls off the cone so Percy offers to buy her a new one but she says no thank you cause it just won’t be the same
crawls into bed after a long day and hides under the covers because sometimes it’s just all too much
builds a huge pillow and blanket fort in her living room because it’s been too long since she’s made one and sometimes it’s just nice to do things she didn’t always get to do as a kid– and there’s pizza and popcorn and cookies and fairly lights and disney movies and cuddling and laughter. So much laughter.
hand draws Chiron father’s day cards every year because she just loves him and she wants/needs him to know how much
smiles at every little kid she passes on the street and has to stop herself from petting every dog she walks by
gets scared in the dark sometimes so she just needs whoever is with her to hold her hand until she can get her bearings
sorts halloween candy into different labeled buckets for kids who have certain allergies and she always buys an extra bag for the kids who come later and may not have as much as everyone else
sobs every time she watches The Notebook because no matter how ridiculous the story may seem in real world context, it’s just so damn happy and heartbreaking all at the same time
spends weeks picking out birthday and christmas presents for her friends and family because she wants them to be as special and personal as they can possibly be– sometimes she even puts notes in her phone about inside jokes so she won’t forget when it comes time to start shopping
plans special picnics in the park for her and Percy because she wants to make sure he feels as special as he makes her feel
just Annabeth who isn’t usually good with her feelings but dives into them because it just feels good to feel things