It’s funny, isn’t it, the way denial can become a second skin, so comfortable you forget what your actual bones feel like underneath buckle up, it is one of my longer ones but that just means that there is a lot of info. For so long I treated my body’s quirks like mismatched socks—strange, a little annoying, but nothing worth sorting through or making sense of, certainly not a system, certainly not a syndrome. The very idea that my best friend in the USA could be right about these so-called “zebra” diagnoses—Hypermobility, POTS, Ehlers-Danlos Syndrome—was just another piece of mail I kept refusing to open. She’d drop hints, precise as pinpricks, calling out symptoms I’d never said out loud, sometimes before I even knew I had them. It should have been unsettling, maybe it was a little, but more than anything it was a nagging chorus in the background of my life: you’re not just making it up, you’re not exaggerating, there’s a pattern here and you’re the only one refusing to see it well you and the medical professionals you go up against way to often for yourself not as well as for others but it is way to often and self diagnosis is apparently a think in this area because of how often it is missed just like with ASD especially in women lately finally being figured out that we have different indicators for health issues just like we have different indicators for heart attacks. If you didn’t know the last one I suggest you pause here and go look up the signs for women because you need to know them.

It’s not like I was unaware of my body’s oddities. I noticed my joints could do things the other dancers’ joints couldn’t do, back when I was winning gold medals and stretching beyond what was supposed to be possible. There’s a memory—burned bright and sharp—of me, maybe six or seven years old, standing in a mirrored studio, legs locked straight, palms flush against the floor, not even a twinge of stretch, while the other kids grimaced and groaned. I thought I was just unusually talented, special in a good way, a secret superpower. No one ever said, “Hey, that’s not normal.” Or maybe they did and I just refused to admit it because here I was normal, here my differences didn’t seem to be a bad thing or a reason to be picked on, maybe the desire to be accepted or to be good at something, anything, even if it was being flexible to the point of absurdity.

If I look back—which, let’s be honest, is a dangerous game when you’re trying to hold together a rickety scaffolding of denial and half-remembered gym class injuries—I realize that my entire childhood was a collection of bright red flags, all waving in the breeze while I pirouetted past them in my dance competitions. I could do splits that terrified the other kids, bend forward to press my palms flat to the floor, knees locked and unbothered, no stretching sensation, just this weird sense of “shouldn’t everyone be able to do this?” My elbows would hyperextend in a way that made my teachers wince, and still, I chalked it all up to being “flexible.” What a charming euphemism for “your collagen is a rebel and your connective tissue missed the memo.” They were not “that is weird show me again.” Or “that is a neat trick.” They were signs of something that could be extremely dangerous depending on what is all going on and where you land on severity and the spectrum for one of them.

My wrists, those traitors, are shouting now. It’s like they’re finally fed up with being ignored, sending pain signals as punctuation marks, underlining every keystroke, every turn of the doorknob, every failed attempt to open a jar. The bilateral carpal tunnel release surgery did something, but not enough, and now it’s clear why. The surgery was never going to fix the root issue, because the root was twisting back through all those years of ignoring hypermobility, all those years of pretending that joints that bend and sway like willow branches are just a quirk, not a warning. My fingers bend back at the first knuckle, the way they always have, and I’d laugh about it, show off at parties, while secretly cradling my hands when no one was looking, quietly wishing typing didn’t feel like I was hammering on glass more and more often.

Even writing this, my fingers—first knuckle, all except the stubborn thumb and pinky—are bending at odd angles without me quite meaning for them to now that I am aware of the issue. Writing hurts sometimes, typing can be an exercise in pain management, and yet I kept telling myself that I just needed a better keyboard or more ergonomic posture and I kept brushing off the mild increase in flexibility there that isn’t normal. Clearly the answer was new office supplies, not a new paradigm for understanding my body. I was so invested in not seeing what was right in front of me that I practically built a shrine to plausible deniability. Which is not the most common thing for me at all, I half wonder if my mind wasn’t protecting itself when so much was going on. Some things are just instinctive even when you’re the medical odd ball.

It’s bizarre, almost cruel, how the body keeps the score—every stretch, every unnecessary surgery, every night spent awake with pain or with questions that don’t have tidy answers. then there’s the weird parade of symptoms that, individually, make no sense, but together form a chorus line of “aha” moments. POTS, for instance: Postural Orthostatic Tachycardia Syndrome, which sounds like a mouthful and feels like the inside of a spinning top. I’d read about the salt thing—how people with POTS crave salt because it helps with blood pressure—and had one of those “wait a minute” moments. I remembered how, every time I guzzled Powerade or Gatorade on long drives, the nausea and pounding headaches would fade into the background, almost like magic. I’d never pieced it together until I stumbled onto a blog post and realized the connection. It wasn’t just the sugar or the hydration; it was the salt, the thing my body kept quietly begging for but I kept denying, convinced I was just being dramatic. While instead it was like every domino I’d been lining up for years suddenly toppled at once. The pinch of salt on my tongue Thursday night—a desperate, late-night experiment—changed everything such a small thing you would think but nope not that night, it was the thought of I have tried everything else and while it is mitigated to a degree it isn’t as much as I would hope but far more then I could have hoped at the same time. The headache retreated, that old familiar coat-hanger pain (shoulders, neck, the weight of invisible hands pressing down) loosened its grip, and for the first time in recent memory, the nausea faded to a manageable hum.

I cursed, naturally. It’s what I do when I’m right and I wish I wasn’t. There’s something infuriating about finally seeing the pattern, about realizing that your body has been screaming its secrets for years and you were the one plugging your ears. I didn’t sleep that night, not really. Research became compulsion, tabs multiplying across my screen in a furious digital sprawl: connective tissue, dysautonomia, genetic mutations, stories from strangers who could have been writing my medical autobiography. I recognized myself in their words, in the chaos and the clarity and the exhaustion that comes from living in a body that refuses to read the manual.

It’s the same feeling I had before, with the ASD diagnosis, that ache of recognition tinged with dread. Relief and fear in equal measure. This is it; this is the missing piece, the one that unlocks the logic behind dozens of seemingly unrelated symptoms. Why I get dizzy after eating. Why the urge to lie down hits like a tidal wave after every meal. Why traditional chairs feel like medieval torture devices and I prefer the floor, sprawling out in whatever contorted pose brings a second’s peace. Why I walk into door frames and table corners as if gravity itself is conspiring against me. Why my knee folds up to my face like it’s nothing, while others stare in horror or envy, unaware of the price. Yet oddly enough my accuracy with a fire arm and in archery and lack of bumping into things still seems out there.

I find myself thinking about childhood, about how much of my success in dance wasn’t just talent or work, but this odd, elastic gift I never asked for. Those stretches that won me medals were actually red flags. It’s a strange thing, to realize the traits you once celebrated are now suspect, evidence not of advantage but of vulnerability. The chaos of this realization is dizzying. My mind spins with memories reinterpreted—aches and sprains, headaches and fatigue, moments of clumsiness, bouts of fog so thick I could barely think—suddenly fitting together in a way that is both satisfying and terrifying. I thought the learning my ability to talk was a mask was harsh, this is right up there and pretty damn close though at least I haven’t hit sensory overload and withdrawn again. That’s a win right?

There’s resistance, of course. Part of me wants this to be wrong, wants there to be a simple solution, a pill or a surgery or some trick I haven’t learned yet. But I know, with that same bone-deep certainty that accompanied every diagnosis before, that this is real. The sense of freedom that comes with understanding is paired with a new burden: now, I have to do something about it. I can’t pretend ignorance anymore. The research continues, late into the night, a feverish search for strategies, for mitigation, for hope. I check facts obsessively, cross-referencing studies and anecdotes, looking for patterns, for possibilities, for a way forward. I oscillate between gratitude for the clarity and grief for the time lost, the years spent fighting symptoms I didn’t understand, blaming myself for weakness or failure. The very few times this sense of rightness has occurred with my health it has been spot on. Like finding that missing puzzle piece that was missing for weeks just before you take apart the 5000 pc puzzle it came from by minutes. It has happened so few times that not only can I count it on one hand but I can not say I am wrong with any basis on past evidence which is all I have after all as I can not see into the future as much as I may want to.

Even now, as I write this, my hands ache and my shoulders burn. But there’s a new awareness, a new resolve, threaded through the chaos. I am learning the language of my body, listening closer than I ever have before. Maybe it took fifteen years too long. Maybe I’ll always be a little angry about that. But I’m here now, tangled in the messy, beautiful chaos of discovery, ready—finally—to stop denying what’s been true all along.

Now to do even further research because if simple adjusting my laying position and having a bit of salt can cause such a difference what else may have the same impact at least until I can get into a specialist after I get into my family doctor. One who I can already see shaking his head and sending me off to the specialist while we wait treating me as if it was a done deal. It is how I got the ASD diagnosis, and it is how I got the Fibro diagnosis. Sad that such big things started with me pushing and a random comment or post I had read instead of a doctor going “we need to look deeper into these issues”. How much pain could I have been spared? At least the doctor I will go and see is familiar with me and my history so it will make it easier that is once I work up the courage to get an official diagnosis and I know the cons of that. Informed choices means informed and in that area I rarely find someone that explains things to me even at a basic level instead of assuming that I will just go along with what they say because they went to school. Nope, to many times have I proven how deadly that can be and gotten damn lucky.

This is hard, I will not down play that. I will also not minimize how much relief it is to have the why at least partly and have a direction to head in. Instead of hearing “yup your tachycardia isn’t anything to worry about” not even from the doctor himself but his assistant nope not a nurse either. This was after having to wear a halter monitor to figure things out. Since when is a stupid high heart rate not a big deal? Yes I have heard this phrase more then once just for different things though no less serious. I have even heard I am making a big fuss out of nothing, turns out it wasn’t nothing and almost cost my life because I went home when I should have been brought immediately to surgery.

Let me be blunt, doctors are human and they fuck up. Ask questions until you are happy with how much you understand and the why do not let them rush you out. If they do ask if they are denying you the ability to make a fully informed choice and if they are you would like it documented in your medical records. They change their tune real fast. Also it is sadly a fact that women are dismissed and not taken seriously, a horrid example is women with heart attacks having to pretend to have the male symptoms to get the fast care they need and it has saved more lives then is remotely in this galaxy okay. We get a lot of “toughen up” “your just making a big deal out of nothing” “go home you will feel better” got a neurologist who had a few words to say with that one when I was helping someone as an advocate. “it is just anxiety” I was on that receiving end my response was not what they wanted.

Women are dismissed and misdiagnosed way to damn often. It get’s even worse when you add on the discrimination when you have psychological diagnosis in your medical information. It makes me wish I could hide that from the doctors when hiding stuff can be dangerous as fucking hell. I have been removed by force from the ER and had the doctor try and say I didn’t need MY wheelchair, you know the one I came in with and is not where near what a hospital has. That one I was just faking to be able to use according to her. I was just there to drug seek (uh yea have you seen the meds I take, I do not need the ER for that thank you and I have to be fought with to take them in the first place piss off). I was a red nigger. So not only did we have her being racially discriminating but we also had the pysch aspect which is scary as hell.

The first interaction with her I wanted a chaperone which is my legal right. She would come in often without that chaperone even after she got in shit for doing it. She was pushing at me to get me to totally shut down and to my shame by the end of it that is exactly what happened. She got pissed off when the psych eval didn’t go her way and she got told she was stepping out of her area and therefor practicing medicine without a license in that area. I would have been terrified if I was her as that is jail time hands down. She refused to let that doctor have anything to do with me. She had the next doctor so snowed that they out right denied me care and the right to a second opinion. She dismissed critical blood results after the ER protocol kicked in to order blood work. She made me wait in that room before even coming to see me for 8 hours in utter agony and unable to ingest anything for going on two and a half days including water. She didn’t even order the blood work and didn’t come to see me until those results came in and I overheard the nurses getting more then a little pissed off about what was going on.

She even ordered meds that I told her that I was allergic to and are all over my damn file and medical alert. Even after she was corrected by the nurses, she refused to get internal medicine involved which is what I needed. I had a cope a few days later and I could even tell by the images before they got explained that it was bad. I needed a feeding tube for a few weeks while it healed, it was only because the ER protocol ordered IV fluids that I even made it long enough to get more help. My kidneys were showing signs of distress and my liver to. She really wanted it to be psychologically not physical to the point of a few psych evals despite the same result every time. Any nurse, or medical staff who went at her over her despicable behavior I never saw again.

The worst part? It is not the first time either my gender has caused my medical issues to get dismissed, nor my ancestory because I am first nations so I must be going after drugs, nor my psych issues been the be all end all for what is wrong. Pulmanory embolisisms are silent killers, had I not lost my shit in DECEMBER they would not have been caught. I only lost my shit because of what was all going on that got me there and what wasn’t done. I knew something was very wrong and I knew it sure as fuck wasn’t anxiety and I also knew that an elevated clotting factor blood result no matter how much out of the norm is a sign of a really big issue. She wanted to send me home because I needed sedation to get a test done because it was a test my little girl went through that nearly broke me. The only one in those long years that resulted in my daughter passing away at the end that had me losing it badly which should say a lot. The worst part is that the worst experiences that have been the most dangerous has been female doctors.

The only good thing about those two experiences is the fact I was in a separate room where I legally could record and not tell them. No matter what those signs say. It is one party consent and the only consent that matters in that case is the person who’s information is protected by privacy laws. As long as I won’t catch another patients information I can record and this is done for our safety. I always record my appointments because when it is me as the patient I have major issues recalling things after so I listen to it again after to put the missing pieces in place then delete it in most cases. This type of situation though I didn’t delete it, now I didn’t sue them because I just couldn’t bring myself to do it though I could still with the last one from December. I instead turned the recordings over to the collage of phsyicans and surgeons, they are still looking into the most recent one but her license is suspended at the moment. The other one? She will never be even allowed to change the garbage bags in a patients room again let alone practice medicine.

How does this tie into this most recent discovery? Easy. Due to so many times running into this since my late teens and I was in charge of my own medical care it has caused horrible trauma and PTSD. I was able to push through it till the most recent incidents, yes the ones I just talked about, now I am terrified at what sort of gaslighting and abuse I am going to have to go through to get this dealt with in a profession I hold so close to my heart and can’t seem to stay away from. How many doctors will I need to tell my story to? How many times am I going to have to tell my story? How many times will I be told “it isnt that big a deal” after that? How many times am I going to be begging for the care I need? How many times will I walk out of an appointment in utter tears? Eventually those became to hard to face easily even when you should. Eventually it has you delaying medical care even if you are very well aware of what is going on and how bad it could be. It has cost lives and it will not stop till we stop letting them do this in the smallest of ways. I don’t want to open this can of worms I am scared of what I will have to go through and that is sickening given how bad things can get. Did I mention one of the symptoms I have that is pretty common is the fact that I stop breathing and need to remind myself to breath when I realize I have stopped doing what should be just automatic? That sound pretty severe to you? If so, then you know how dangerous it is for me to delay this and yet here I am doing exactly that while being very well aware of this. I am also well aware that this is a very common diagnosis that goes with many neurodivergent conditions, not always all three I am just so fucking special there. It also is very common with these to have sleep apnea and here I am unable to go for the testing needed to get the device I need covered even though every doctor and specialist says I need them because I have sleep hyponea similar I just breath really shallow instead of regular stopping at least enough for that diagnosis. Instead I just routinely have my O2 in the high seventy to low eighty range when I am sleeping.

No big deal right? None of it is that big a deal right? Well now I have even more I need to have even if I don’t get the diagnosis that I have needed anyway for years. Yet I will likely never have because I have issues figuring out how I am going to have more then one meal each day if I am lucky. Usually it is every other day and boost for the rest because boost is covered with no issue. Give me less then a week of that cost and I would be able to afford to feed myself with some budgeting and keeping an eye on sales. How do I get what I need when I can’t even meet all of my basic needs of survival? With inflation it is getting even worse as well despite the ‘raise’ on what is given which is still far less then even the covid benefits and that is with special diet allowances. I just so tired of fighting for my needs and medical support equipment not being more then a pipe dream and I can remain standing thriving through a lot so to think this is breaking me is a bitter fucking pill to swallow and I am mad and defeated most of the time. I hate it that it is discrimination in most cases that is causing these issues even the ‘you don’t need as much as anyone else to afford to meet your basic needs cause they must be less because you can’t work as much or at all as others.’ I often feel like I am “less then” and it sickens me that it is not just me but so many others as well.