#(is also something I've grappled with in recent years bc I think the author is actually probably wildly misogynistic) | Explore Tumblr Posts and Blogs

foolishfalls · 9 months

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I've been kind of just chucking my feelings out into many a void today and I guess I'll do it here. Who knows where I'm likely to get a response??

below the cut i'll be discussing repeat injuries, chronic pain, how my mental health interacts with/contributes to them, and my growing rage and exasperation with the american healthcare system.

I feel like for much of my life I have been grappling with nebulous burgeoning health problems that were rarely serious enough for me to really seek out a doctor, plus, my parents are both notoriously bad at seeing doctors and taking care of themselves too, so living with them into adulthood definitely didn't help. (It's tough as hell being a PDA autistic up against all these very harsh hierarchical systems so full of barriers and demands amirite?)

given the autism with a pretty heavy PDA slant, making and keeping appointments has been a harrowing process for me for my whole entire life, as long as I can remember. It doesn't help that I am also terrible at advocating for myself and have been consistently dismissed by doctors over stuff that I experience... I've just kind of learned to take it lying down which is not a good habit but i get easily exasperated trying to explain myself to doctors. i struggle a ton with even talking to people i see as holding authority over me (i attribute this to ten years of catholic school kind of breaking me mentally and emotionally. if you have been to a religious or catholic school perhaps you have an understanding of this kind of mistreatment)

anyway, i just feel like the pandemic and the ongoing collapse of the healthcare system has just really brought this to a head for me recently. In the last 6 years or so, i've injured both of my ankles several times, rolls and sprains. honestly, the first few times, i was being dumb and not paying attention (i went through a terrible binge drinking period during my 21st year, hadn't yet discovered that i literally cannot wear most shoes besides flat-soled sneakers) but even when I tried to be careful after one or two bad sprains that went unchecked, mostly, I would end up hurting myself. Two of the subsequent times I hurt myself while moving between apartments (I've always lived in walk-ups and have usually moved everything myself with little help aside from friends) and bc of pretty bad cracks on sidewalks (big city infrastructure is total garbage, big surprise!)

like, as my repeated injuries got worse, my capacity for physical activity has too, and I already struggled for years as a kid and teen to develop a decent exercise/activity routine. I think I also have low muscle tone and really slow recovery time due to autism or some co-morbid condition (such as EDS or something. i have weird, weak, clicky joints, but i'm not really typically hypermobile?)

anyway, every time i went in for an x-ray or to see a doctor, i basically got told just to RICE and take care of it at home, so I didn't seek further help. the one time i did was last year, and it took a lot of advocating and was quite hard for me, and then it took months of waiting to even get an appointment with an ortho. This is after 5-6 sprains on my right ankle, and 2 on my left. when i sprained my left ankle the last time, i landed quite hard on my right knee and definitely hurt that too, because it still clicks and acts up.

of course, last august, my ortho appt finally approaches, and i get fucking covid literally the day before. i was so sick and tired i just no-showed and honestly forgot about it. if I miss an appointment and dont reschedule immediately, the likelihood that I will do that is very low. once again, PDA is a bitch.

but, at least since then I haven't actually injured my ankle. However, who knows what the effects of covid were on my body, my joints, who tf knows?? we know it causes and exacerbates all kind of conditions in people. I barely have been able to get doctors to take me seriously about the stuff I'm chronically experiencing, so even bringing up long-covid has felt kind of scary and pointless, tbh.

Fast forward to april of this year. after working in office jobs and sitting for two years straight, which caused me a ton of awful burnout, i end up working part-time at a cafe. while I'm working there, i injure/strain my hip and low back while slipping on a wet floor. this pain keeps me in bed consistently for about 3 weeks and I go to see my doctor about it. he diagnoses me with sciatic pain because it seems to be running and radiating down from my leg and hip. (mind you this is my right hip, which is attached to the knee i've hurt maybe twice, and the ankle i've injured 5-6 times!)

Up until then, I had been receiving some PT at my previous job to help stabilize and strengthen my hips, which my PT determined as the main cause for my ankle injuries. my hips shake when i walk and tend to cause a lot of instability. I made some progress, but I was receiving PT at my old job, and my insurance changed when I left it, so i was uninsured for like three months in the beginning of this year while trying to get new coverage. my hip pain was bad for about a month, after seeing my doctor, i got x-rays and they came back clean but the pain wasn't fully subsiding, so he writes me referrals for PT and pain management.

Because of my shit association with PT due to my old job, and the fact that the pain finally began to subside after the x rays came back (I kind of thought, oh, maybe it was lingering mostly due to my stress, guess im good) I dont make a PT appointment right away. I look into one place i'm referred to and it turns out they dont take my insurance which is bullshit. Then, I go to my last option, the hospital system I see my PCP out of. It's basically the lowest quality medical care you can access with medicaid which is what i currently have, and due to my experience working in a high-end PT office i know what the difference will be. this mental block kind of keeps me thinking it will be pointless so i took a while to make an appointment, trying to do exercises at home for now since i had a baseline from my old job.

While all this is happening, as my hip pain is subsiding, i get a weird lump/bump where my heel meets my right ankle, my bad ankle. it has been this way since about the end of May, now, and it has been the source of some of the most disarming, weird, confusing pain I've ever experienced in my life.

I also didn't talk yet about how realizing I'm autistic helped me make sense of my weird pain tolerance. on one hand, i've always been notably sensitive to even the slightest pain. would sob and sob over the smallest things as a kid. i think due to the reactions of adults around me, i gradually learned to dissociate in order to bury my pain. so, i feel like i both experience pain very strongly and intensely, and at times it can be so debilitating and distracting that i can focus on little else and it almost causes me brain fog and fatigue, while at other times, it is kind of distant and i tend to dissociate from it.

with this new pain in my heel, there's definitely some nerve shit involved, i think... i get twitches/spasms sometimes, numbness, tingling, sharp pain, dull pain. and it's seemingly unpredictable. i wear compression socks or a sleeve almost every single day because it's all that helps. it's past the point of icing helping it much because it's not swollen.

basically every time i have seen a doctor about my pain leading up to now, I have brought up the possibility of some underlying cause, but i always get dismissed. told I'm digging too deep or thinking too hard and just stressing myself out, despite the fact that I've always been clumsy and injury prone and had coordination issues. I guess bc those coordination issues haven't been well documented, and i am not officially diagnosed with autism or anything that could support my claims, i just don't get taken seriously, despite my experience being quite abnormal from what i understand when talking to others!!!

idk where I'm even going with this. today i was at a PT appointment for my hip and was on the verge of tears the whole time. I have to go back to my primary doctor in order for them to even begin attending to my heel despite that being the worst pain, and despite the fact that my hip/knee/heel/sciatica are all definitely related. I'm assuming this is because of insurance bullshit, i know it's pretty basic procedure, but it's exhausting that the american healthcare system is set up this way. it's really hard when you're autistic also and struggle with making and keeping appointments. it doesn't help that i've been dismissed by so many doctors that i just get intense anxiety about even having to go back again.

i'm also looking for a new PCP anyway because i don't like that mine doesn't take me very seriously and i am also transitioning and very scared/a bit paranoid about facing any transphobia or disclosing that fact to him if we have to run any blood tests. so maybe I'll have a better experience elsewhere, but this heel stuff has gone on for so long that i just have to bite the bullet and go back to the same place if it will be quicker to do so anyway.

and like, all procedural/red tape/insurance bullshit aside, bottom of the barrel PT treatment here is like. so dismal. once again maybe it's just bc i have the point of comparison from my old job, but i feel like the treatment is really just. so lackluster, doctors are seeing multiple patients at once, you're rushed through your visit, you don't have time to ask questions. the whole time i've been there no one has so much as taken a closer look at my heel. i know i'm there for my hip and you have to say that on paper for insurance, but like, damn, not even just a quick check??

I am afraid it's because I'm habitually downplaying the pain to cope and because i'm terrified of doctors. so maybe it's my fault.

still, the system is downright hostile to people who struggle with that stuff.

i don't have much else to say. just wanted to dump this somewhere and see if anyone else can understand or empathize with my experience. i don't talk about this super openly or readily because I don't even feel like i can call it chronic pain sometimes despite this being a several month long problem and really an issue that is about five years old, despite it being inconsistent... mostly because i just don't have the affirmation of a medical diagnosis. i have considered getting a cane/mobility aid very thoroughly recently because i know it would help me (and maybe even force doctors to take me seriously) but there's a part of me that feels like i can't or shouldn't. like i'm not valid enough for that, or i can function without it, but i know that's dismissive and so not the right way to think about mobility aids

i mean, it doesn't help that my dad has been limping and had chronic pain for years and has one and still refuses to use it... the internalized ableism runs deep. it's fucked. i'm trying hard to undo it but it's hard when you're already just hard on yourself.

anyway, just sorely needed to get this off my chest. thanks for reading if you do.

EDIT: i also wanted to say,, if you have gone through anything similar, just know you're not alone! so if you want to share your experience or talk about it with me pls know my asks and dms are open.

#personal #chronic pain #healthcare #idk #autism

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