*This started as a post on my Facebook page, but I decided to expand on it here.
Some days the imposter syndrome really kicks me in the butt, especially with the hyper-mobility. I mean, it often kicks me in the butt for other things (Neurodivergence, social anxiety, PTSD etc) but the thing that it really kicks me in the butt for recently is the pain.
Some days, I can’t walk across my living room without my hips threatening to slip on me. Some days I can’t even go into the kitchen to make coffee without my cane. I have “house canes” and “outside canes” at this point. Some days my shoulders and elbows are not in any shape to hold me upright with a cane, so I just sit and lay on the floor with the cats a lot. Those are sitting on the futon with the old hospital table my Godmother gave my Dad (and Dad gave me) and keeping a chair in the kitchen so I can make the cats their meals days.
But I still feel like an imposter. I have met so many other people in the EDS community who have it SO much worse than me. A very good friend of mine (we say we’re Twilight Zone twins because of the crazy number of similarities in our stories) also has EDS and they need a back and rib brace; they dislocate their ribs that often (for me, it’s more the clavicle that was broken when I was a teenager. That thing will twist if you look at it funny).
Regardless, I often find myself feeling like I shouldn’t be talking because my pain is not nearly that bad. Because I don’t have all the braces (though, honestly, I could use some of them). But while I’m in constant pain, every single day, it’s manageable. For me at least.
There’s that joke meme about a demon possessing your body and going, “OH HECK! What is that pain?! Why does it feel like this?!??” and the possessed going, “…Yeah it does that. Caveat Emptor buddy. Enjoy!”
That comes to mind a lot for me lately.
Right now my Doctors are banding together to help me get an electric chair, because I can’t even make it to the curb, with my cane, on the ice, to get in a Handi-Transit or a taxi, let alone to the end of the block to the bus stop. I mean, even Neurology – and it isn’t even his JOB to worry about connective tissue issues – is throwing his name in behind the bid for a chair, because he sees how badly things have deteriorated in the last year. So we’re trying to get me a chair, so I’m not completely homebound this winter. So I have some modicum of independence and self sufficiency and can just hold my head up.
But then I think about a fellow zebra I know who lives in a neck brace because they literally cannot hold their head up…… *shrug and frown* and I get hit with a right-hook of “you’re not disabled ENOUGH! How dare you complain how dare you ask for help how DARE YOU?!??”
My father said that to me once when I was in my very early twenties. I was trying to tell him about the things people made me do when I couldn’t safely live with him, and his response was, “How DARE YOU!”
I still hear that in my head a lot.
That it was under duress, didn’t matter.
That people did horrible things to me, didn’t matter.
That I had to do bad things to other people (to “earn” a roof over my head)?
HOW DARE YOU!
That response is still rattling around in the back of my head when I dare to think of myself in the same light as other disabled people. Other people’s pain is worse than mine. Other people are more immobilized. Other people need more help than I do. So how DARE I try to sneak myself into their sphere. *frowns*
I know that’s wrong.
Logically I know that’s wrong.
Honestly I can’t tell you the first time I dislocated a joint, because I wasn’t allowed to be hurt.
“Walk it off Sascha.”
“I CAN’T WALK!”
“Oh for the love of–” *grabs me by the scruff of my neck and pulls me to my feet. When I fall I get hit for being a drama queen. I get left behind with a shared eye roll between my parents, who go off with my sisters*
I remember that happening at about eight. I know it wasn’t the first time either. I can’t remember when the first time was though.
I remember dislocating fingers and shoulders and ankles and elbows. I remember that horrible pain that sucks the breath right out of you that I’ve only realized is how it feel to dislocate your ribs. I can’t remember the first time I dislocated a rib though; I’ve been doing it for so long. And I was always made to just suck it up and work through it. Work through the pain. Go to school, regardless. Go to church, regardless. And then when the pain would finally disappear, it was such a relief and I just thanked my lucky stars. Until the next time.
When I told my parents about the pain, or the clicking, or the inability to move my fingers or toes or arms or put weight on an ankle, I wasn’t ever taken to the Doctors for it. The family GP was an idiot though, so even if they had I doubt now I would have found any help. When I told them I was more likely to be questioned and doubted; poked in the injury until I screamed and then told I was being a drama queen and getting a cuffed ear for good measure.
So here I am at 8 months until 40, still doubting myself and my pain. Still doubting that I deserve the care and medical aids and help that I so obviously do. I’ve spent my whole life having my Autism, and my hyper-mobility, and my anxiety, and my trauma minimized and held against me that I honestly struggle to own it myself.
Every voice in my head tells me I’m a drama queen and an Imposter.
Sascha’s a liar. Sascha tells stories.
This is just another one of drama queen Sascha’s stories.
But it’s not.
And I have to learn to allow that to be the truth.
I can’t walk 10 steps, let along 10 metres outside right now on that ice without falling. Even with my cane it would be tricky at best. I can’t walk to the Giant Tiger two blocks away for milk on a nice spring day anymore. I struggle to cross the street without falling and risking getting hit by a car most days these days.
I need help.
I need that chair.
I hope Hope HOPE that Ottawa will okay it for me.
It’s a Hail Mary pass, but I hope they say yes because if they don’t I’m kind of trapped here.
With no way off.
It’s not good right now, lovelies.
I’m trying to own that. Be okay with it. Be okay with saying it out loud and not holding my disability and my pain up against other people’s. Trying. It’s not easy. Those ugly minimizing voices in my head aren’t making it easier, but I’m trying not to listen to them.
I’m in constant paint. Ever day. I have been for so much of my life that actually having a moment of being Pain Free last year lead to a full block anxiety attack because I thought there was something WRONG.
Letting that sink in, internalizing that… that’s taking some work too right now.
But I’m trying.