EDS Story, from ‘Brazen Musings of a Rainbow Zebra’ 2017 (I have moved this as this blog is old and now locked)
I fell through the cracks in regards to the EDS diagnosis as badly as autism, or even worse. To be frank, the notion of having fallen through the cracks with my autism diagnosis has become a walk in the park, compared to the horrors of the physically foreboding death sentence that has become my nightmarish reality. I actually think my EDS is somewhat more severe. I know it is. That's what the geneticist (Dr Yee) said. It's not that it's a vascular type per se, but, deeply 'classical', it's really in my skin and tissues. I feel I fit into the classical category, more than the type 3. I feel it's type 1 or 2, or maybe it's just a prominent overlap. Who knows? It's not cut and dry anymore.
Overall, on a spectrum, if it were linear (just to make it simpler - I know it's not linear) I was always more like, in the middle at least. Not on the very mildest end. I remember the suffering. Though at the time I wasn't completely consciously aware... I don't know who else remembers their own experience, but I bet many of us do.
My body always felt like spongy putty that would rip and tear in response to rapid movements or too much pressure. I didn't realize it wasn't normal to always get hurt a little, but I boxed in my body as much as I could... and for that, I had an 'attitude" problem. I was a wimp. I was a wuss. For trying to prevent injuries on my fragile body, I was called lazy and 'self-entitled.' As a psychological defense mechanism, I half-believed it, and pushed myself as far as i could maybe go, but then I half-rebelled from it passive-aggressively .. continuing to self-protect as much as I could get away with, albeit while slightly feeling like "maybe I am/I guess I am a brat" for it.
There are reasons for why I fell through the cracks with EDS too, which need to be spoken for, like, I'm not stereotypically hypermobile in a way that I would have thought meant anything - other than being 'double jointed in some joints. Actually fixating on a stereotype of hyper mobility in EDS is not a good thing at all. I believe that many of the more weakened people, myself included, go stiff like a hardening block of cheese, right before or during the onset of more profound illness.
This could be immunological too, because the poor spongy EDS body does not fight infections it's exposed to very well. Lyme-like chronic infection is possibly present in many of us, and chronic infections are awful for doing damage over time. The longer they're left, the deeper they go (and hide, as well.) After some time of this, and physical damages, the body catapults into a "No! DON'T come apart!" kind of state of shock, or, aggressive defence. Then there's the onset of POTS, co-morbid osteoarthritis, severe pain, and deeper comorbidities piling on.
It was more that my tissues were weak and I was unstable more than 'super bendy.' I did have some 'double joints' like I said, which cracked and popped in and out, and bent somewhat out of normal range. but I couldn't do the splits. I had very soft and baby like skin - and a little oddly gummy - stretchy... but again, I was not 'uber-bendy" like those agile gymnast or ballet girls. I was more of a 'weakling' than them, by far. I was simply spongy and fragile, with weak, clumsy motor. It was like I was shale, or even soapstone - the 'dancer' types were sedimentary - and the 'strong-study bodied' contact sport loving jocks were igneous (rocks.)
It was more like my weakness-born lack of stability caused me to, if I didn't box myself right in; rip rip, pull pull, pop-pop, in-pop out, pull-n-strain, micro-tear.. every time I moved, my body was literally singing "zipadee-doo-da" to that 'beat' if I had to be more aggressively physically active. That felt like assault. But nobody listened to me, or believed me .. and that was partly because I had trouble describing this expeirence. Again, it wasn't even this full on, obvious "dislocation" although I think I had those occasionally, and it'd hurt so bad I'd go to put it back as soon as it happened. After all this 'assault' from physical activity, I would ache and ache and ache like hell, after. The doctors said I had "really bad growing pains" when my mom cited "this can't be normal."But they laughed at her apparent melodrama.
I would also just get tired, from prolonged physical exertion, like standing in line ups, being at the store for a long time. I'd always beg to ride in the card. I'd grab onto things and lean on them for support, swaying sideways, slouching and slumping over (which Dr Yee, my diagnosing geneticist, noticed in my childhood photos) of course all to be met with criticism. "Don't slouch, stand up straight, come on now." I was constantly called lazy for coming home from school and collapsing in bed, and wanting to do my homework there "What are you doing, sit at a desk."
When I was exhausted and sore and cranky from all that horrible, 'forced' physical exertion, I was a whiny brat. I had a 'bad attitude.' I began to believe it.
My skin and tissues were what stood out the most. I always felt 'super soft' and in the back of my mind I felt like that stood out, it wasn't normal, but I didn't exactly consciously realize I should try to compare it - as It was drummed into me that I needed to "keep up with the others" - so I did. Well, I tried really hard--injuriously hard, over and over. I kept 'hurting myself a little" and having to try and ignore it. I didn't even know that being soft-bodied and 'sort of hurting self' when moving around all the time was somehow abnormal or a problem. Well, I sort of did, but then, I'd stop myself and remember that I'm 'supposed to not to."
I was gaslit to believe that, just as told, I was a whiny, lazy brat when I was tired and hurting and grew exhausted and cold. I'd go escape into the shower and huddle there in the fetal position for hours until the hot water tank was done... after being exposed to too much physical exertion aka. "physical offence." That was me when I was really young, like up until age 7-8. Then puberty hit. My body began to make "steroids."
After a while, I got feisty to try and keep up. The 'steroids' helped, but I was very moody and between the autism and that, I was treated like somewhat of a rotten kid. I walked around believing that was all I was, anyway. I tried to be nice but I was temperamental and feisty. I hated myself for it. I didn't realize I was 'stuck' in fight or flight. I felt like it was against my true nature but somehow, I'd taken on this 'attitude' (it was for survival.) I picked up caffeine, nicotine, and even booze to douse the pains. I tried to be so tough. I got tough to muffle my internal screams that I didn't even believe deserved to be heard after a while.
I kept on hurting myself perpetually, for years on end, because I had no understanding of what I really was, and why, and how to take care. The birth of my children shocked my body into some degree of imbalance and higher pain levels, but for the first few years of their lives, it manifested as nothing but obnoxious mania..and physically, I developed a superficial layer of tone. From the physical gym "work out" of being a mom with secretly weak connective tissues, trying to "(quite literally) 'hold it together. I began corroding inside, but at first, I looked superficially more than just fine. I was like a slender triathlete in training, with nice, soft skin which was superficially glowing, beginning to be tinted from slightly overworking adrenals - which looked like nothing more than an application of Jergen's "Natural Glow" or some time on the beach. It was a fantastically deceptive picture of simulated health.
...until I started to fall ill, about the time they started school. I started to go more pallor, even grey-ish, and then the fatigue started to hit me hard. Then the damage from all those micro-rips webbed into my tissues, like a 'wave' of 'fibromyalgia', started to sink in. Then I started to go stiff. As I got sicker, my degree of hypermobility lessened, because of the stiffness - an onset of losing my coping-threshold unto illness. It was irony. Fatally detrimental irony, that the most stereotypically presenting feature of EDS would actually decrease due to the worsening of the illness' effects in me..
But, I discovered EDS anyway. Through my younger son, who was presenting with profound hyper mobility. I figured all that out even, I theorized about the ironic onset of stiffness. However, because I tried to explain it in my quirky, precocious, autistic way "well - you don't have to be that hyper mobile to be EDS, and also, I am still loose jointed but I am very stiff too...and that paradox really really hurts".. I was belittled, and horribly pathalogized for trying to explain that and some. Then, they wrote horrible things about me in medical files, the more I suffered, the more I tried to voice it, the worse things they wrote. The more I tried to explain that my way of communication may seem more quirky due to autism, the more seemingly abusive and defamatory they got. It was pure torture of my soul. It was so hurtful there are no words.
Eventually, this took a horrible toll on my body, too. I went into shock. I gave up on medical help. I went back into self medicating addictions. I pushed myself and popped T1s and drank coffees on a practically empty stomach - I was partially anorexic due to ignored gastroparesis and chronic low grade painkiller use to cope. In was about 2013. I was this dark haired, pale little manic pixie presenting 'pinner', I was smiling through severe pain inside. Saying "I'm A Girl Outside The Box" in my blogs, on YouTube. Being the 'wounded healer', pretending I was fine. By then, branded in medical files as a psycho-bitch supposedly 'manipulative' villain undeserving of medical care, for being like a boppier version of "the girl with the dragon tattoo.." to them.
I was gaslit and I felt like "maybe I am deceptive" for the fact that online, I was (at least at first) pretending like I was fine and in fact, using my mission re: sharing about my autism experiencing as a way to self medicate the pain of not getting any help for my Ehlers-Danlos Syndrome. But it all came crashing down when an autistic troll from the autistic community broke my heart by calling me a manipulative poser who probably wasn't actually autistic, and maybe 'deserves what she's getting' in terms of lack of medical help. She then pointed to a group on wrong planet whom she had been engaging with, who were all saying that. I was so crushed. I emotionally folded from there.
So then, I just became hopeless about everything, about the prospect of even engaging in medical care, about trusting anyone at all, really. Things got worse than ever that summer, and I didn't take care of myself. I was shell shocked and heart broken, emotionally. I was in pain and fatigued, and it wasn't letting up - I was very very bothered by all of it. I didn't realize that it'd all come crashing down on me really hard, and I would find myself in a position of wishing I was only just "in sh*tty pain and fatigue" like before, compared to the hells of post-autonomic crisis damage. I didn't realize then that I would soon end up having no choice but to re-engage in medical management, because something devastating was about to hit me. Something apparently called "POTS"
In 2014, my system collapsed. I had a terrifying autonomic nervous system crisis that changed things and crippled me triple fold, forever more. Then, all of a sudden, I had POTS. I had to wear compression stockings and take beta blockers. There was no choice but to be stuck on meds for this, or it would be very scary. I was finally given my rightful diagnoses only then, through a tragic yet serendipitous event, that left me doubly screwed up after.
But then, I returned home, to further ignorance, and defensiveness due to the fact that I had caught them not only failing me, but attempting to throw me under the bus, in action. Instead of apologizing, they pretty well mostly left me to rot some more. Almost for another full year, before another crisis event forced them to at least refer me to in internal medicine doctor, who has at least semi-allied with me ever since.
I got de-conditioned from the onset of POTS towards full-blown dysautonomia.
Then the CCI started 'unlocking' and sinking, and pushing and crushing and grinding in the bottom back of my skull, making me weak and shaky, the more I stand upright, the worse it gets. Like a 76 year old walking hourglass. I have been going this way, ticking on thin ice like this, ever since. My body hit the ultimate wall in 2014 and no matter what I do, I can never, ever get back up and go back to what I was before. My only hope to get some of what I had back is to reach the extensive and specialized rehabilitation help that does not exist here.
I went from cranky, exasperated, fatigued and in pain, but still "sproingy", pumping with adrenalin, still able to push myself youthful spoonie ... to full throttle grandma, rheumatically riddled, utterly crippled, shaky and weak.
What do you have to compare to when your own body is all you know. Not enough, until it's too late.
Then, all you had built to cope with what you knew deep down wasn't exactly "normal" collapsed and leaves you broken, shaken and terminally this way. Deep damage via layers upon layers of micro-physical injuries are even harder to heal from than mental damages. The web of scars had a more "annoying" hold on me, but then it finally engulfed me, in 2014. It will never release me now.
These are scars you can't undo. Wear and tear you can't reverse. At age 32 my tissues feel very similar to what someone with cystic fibrosis' lungs or guts would feel like in their 20's or 30's. It is an awful, foreboding feeling. I feel like I'm in the last phase of my lifespan because of it. The only hope I have, that it's not quite as bad as it feels, is a bittersweet 'hope' that an insidious but vicious Chiari malformation/unstable neck is to blame for exacerbating what I am feeling, and that the fixing of this, albeit risky in itself, could at least reduce that physically 'foreboding' feeling. Reduce is all it can do, because, I know in my heart that even a Chiari surgery, even IF I'm strong enough to pull through, and even IF I get to someone willing to do it, will not ever reverse the damages, but only buy me a little more and quality of time.