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#like you literally went through the experience of having a kid be diagnosed with a lot of mental health issues that went largely unnoticed
probablyhuntersmom · 11 months
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Belos trying the same tactic with both of the poor kids. But what a contrast between the towering monstrous form versus the puddle he was reduced to in the end.
He hurt Luz and Hunter enough. More than enough. He snatched literal life away from them. I'm relieved that both of them had proximity away from him at the time of his death:
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with Hunter being safely far away, and Luz making a conscious decision to walk away from him, so that they didn't have to witness his demise. On top of what they both already had to heal from, witnessing him dying would've been...visceral on another level for their senses, and for the memories they'd be carrying for years afterward.
I wouldn't ever want these to be the last sights (and sounds!) of Belos that Luz and Hunter are exposed to:
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Especially because they had a history of trusting in him first, before experiencing betrayal from him. This scene was freaky enough for an adult audience member like me to watch...I can't imagine being a child, who previously trusted in Belos, placed in this situation.
It was different for Eda, King and even Raine (who has been staging and leading the CATTs rebellion over a long period), who were the ones to finish him off, because they didn't have prior experiences of deeply trusting in Belos first.
Coming in from a clinical perspective as well, if you work as a therapist you have to note down and weigh two areas for every client case: risk factors vs. protective factors that can either worsen or improve whatever mental health conditions they're experiencing. Doing this gives a clearer picture and creates higher awareness of a client's situation and struggles.
I'm zooming in on just risk factors for PTSD symptoms (list is from the National Institute of Mental Health's page about PTSD):
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I underlined the blue to show which risk factors that Luz and Hunter would already be up against without witnessing Belos's death: that's already 7 out of 8!! (keep in mind they saw stuff like the grimwalker graveyard in Belos's mindscape) And these poor babies already met enough criteria for diagnoses of depression and C-PTSD respectively. If they witnessed him dying, it would've been a "big T" trauma event that could do more great damage and complicate the recovery process.
The red underlines are if they witnessed Belos's death, adding more layers of wounding when it comes to the relevant risk factors. And what would intensify things is like I mentioned, their history with Belos in particular is downright messy since they experienced betrayal from him in such awful ways. You can't be betrayed by someone if you didn't first place trust in them. In Hunter's case, he had (and realistically, would still have) love and attachment to Belos.
It's heavy enough that both of them were mourning father figures that left them behind at the start of those 3.5-4 difficult years, and would experience depressive symptoms related to those losses:
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Hunter mourning Belos himself and his life in the Emperor's Coven which brought meaning to his life, while Luz mourned Manny and her use of the glyphs that helped her find her place when there was nothing else that worked.
They would need Camila, Darius and Eda as their solid rock to fall back on for unwavering support, along with the love from everybody else.
If I rewind things a little, I'm also relieved that Hunter wasn't ambushed by Belos in For the Future, and that Luz didn't give into temptation to "blast him away" in Watching and Dreaming:
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Their anger and frustration was most definitely valid, but I'm pretty sure that any decisions to follow through with their desire to strike back at Belos...would've added salt to their moral injuries and bred more painful confusion in the years that they'd have to spend recovering from all that they went through.
Keeping them away from being the ones to finish Belos off was an informed writing decision.
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What we feel in life is entirely dictated by our environments, which is why when you’re young you can feel really out of control. Because you literally are.
As we get older our feelings feel bigger and bigger in our bodies because our brains are continuously developing until we’re 26ish. More machinery means more information is processed. Ever watched a movie you saw 1000000 times as a kid and noticed things that went straight over your head? Yeah, you have much more brain now. You pick up and process more from every experience you have with the world.
But from age 0-26 that’s a continuous ramp up, with a surge from puberty onwards. The reason adolescence is one of the hardest stages of life for many people is because of a particular combination of factors: everything suddenly feels twice as big, frequently overwhelming the system (think of a power surge in a system not quite yet equipped to handle it bc it’s still being built), and a lack of control over their environment. Children are completely powerless beings. They have absolutely no control over any aspect of their lives, and especially during puberty, not even their bodies. This will vary from family to family, and confounding factors like neurodivergence also affect their experiences.
Because our environments are directly responsible for the feelings we experience, and because adolescents’ feelings are suddenly much more intense than they’re used to, their need for control over their environment dramatically increases. This is why they start to push boundaries, they’re trying to assert control over some aspect of their lives, in order to try and change their emotional experience to something more tolerable.
For autistic children, this can manifest in quite extreme ways. We know autistic people have significantly higher neuronal density in certain areas of the brain, so they essentially have the “feelings are too big!!!!” feelings from birth. Neurotypical people experience that in puberty, when their sex hormones trigger a surge of new brain development. So when autistic children go through puberty, it’s another step up for them too, but they had a higher experiential starting point.
If you want to change how you feel, change your environment.
I’m autistic and I had a pretty traumatic childhood, and I did not expect to survive adolescence. I was constantly, constantly overwhelmed, I self harmed, I was suicidal, I was terrified, and confused, and full of rage, and I was drowning in shame over all of it. My parents weren’t equipped and did plenty of damage because of it, but it was just neverending fighting, and drama, and sending me to boarding school, then sending me to some other school across the country, then sending me to a psychiatric hospital, just complete batshit chaos.
I’d received all the standard diagnoses by the time I was 14, but the childhood diagnosis of autism was never acknowledged by my parents apart from when they initially told me, and never told to any of the psychiatrists I was sent to. ADHD, MDD, bipolar, BPD, social anxiety, GAD, and medicated up to my eyeballs with antipsychotics, antidepressants, mood stabilisers, stimulants, some other shit that I can’t remember, and of course hormonal birth control, all concurrently, because my hysterical female hormones were making me insane, obviously.
I finally moved out when I was 17 and I shit you not— overnight, I became sane. At the time I told myself it was because not living with my parents meant we had nothing to fight about. But I only realised yesterday exactly why.
I suddenly was in complete control of my immediate environment. It was my little shitty flat. I could decide everything, I could control my sensory environment for the first time in my life. Light, noise, people being around or not, whatever. Which meant I could control my feelings for the first time in my life. Funny, that. Every other environment I’d ever been in had been determined by my parents, who spent my lifetime proving that they would not acknowledge, respect or meet my sensory and emotional needs. Any environment they were responsible for controlling felt inherently distressing.
If your feelings seem out of control, it’s because they are directly connected to aspects of your environment and your environment is out of your control, and you need to tweak it to a configuration you can tolerate, or even flourish in.
I stopped all my medications cold turkey immediately and that year was the best of my life up to that point. I felt so much peace. I started making art again. I dumped my piece of shit stoner boyfriend and I felt even better. I nurtured a social life. I started my career as a chef. I was so fucking functional, for a 17 year old anyway.
Of course, the kicker is identifying which aspects of your environment are connected to which feelings you have, so you can make changes. And on the whole, people fucking suck at that. What’s worse is that when it concerns a child or an adolescent, it’s even harder for them, so they need the help of the adults around them. And if those adults are not equipped to handle a teenager’s enormous, difficult feelings, they’ll likely seek the help of a psychiatrist. And that’s where the shit hits the fan.
Children have no frame of reference for the majority of their experiences. They’re still learning what things are. You know those jokes about how you could teach your kid an apple is actually called a football and they wouldn’t know the difference? Imagine that, but with emotions. You tell a kid their natural emotional responses to their environment are a disease inherent within them, or a defect of their personality, and watch what happens.
When a child is experiencing emotional distress, they have no fucking idea what they’re feeling. Usually it just feels like A Lot™. A lot of what, who knows, but it’s A Lot. Not knowing what you’re feeling when you’re feeling A Lot adds about 30 tonnes of terror on top of what is already A Lot because you don’t even know how you’re supposed to feel about what you feel.
When I had my first gallbladder attack, I felt like I was actually dying. This is because I had no frame of reference for the feeling. I have felt pain before, I have even felt organ pain before, but I had not experienced THAT organ in pain before. It was extreme, and undefined to me. Those two factors are key.
When I was diagnosed with an ulcer, and medicated for it over two years, I was relieved that I was not dying. I was much less distressed. I was in no less pain. But because I could tick a box in my brain labelled “not dying” next to this feeling, it was a much less terrifying experience. Zero data means death to our minds. We only fear death because there is exactly zero data about what happens when we die, since no one’s lived to say.
I now had some data, it’s an ulcer. I took my medication. It didn’t work, so I tried a different one. It was a little better, maybe?, but that also could just have been my pain getting better on its own.
So anyway, not an ulcer. Gallstones. But every time the pain acted up I would tell my doctor my ulcer is acting up, because I had been informed that this feeling was an ulcer. And they’d help, the way they would if I had an ulcer. But I didn’t.
When a child who is feeling A Lot™ and also has no frame of reference for this enormous feeling, they very understandably freak the fuck out. And then the parents freak out, bc the child feels like they’re dying because they have exactly zero data on this fucking gargantuan feeling taking up the entirety of their brain and body, so the parents think the child is dying so they take the child to the doctor.
We have had many names for human emotional pain. Human emotional pain has never not been what it is. It doesn’t change when the names do.
When I was a 13 year old child, mine was called major depressive disorder. I was sat in front of a doctor, whom I trusted implicitly because he was a doctor, and he told me that this particular feeling that I thought was Death Itself was “depression”. Oh! I thought. At least I’m not dying! He then proceeded to explain what depression meant, and talk about the other symptoms, etc. I walked away knowing I was depressed, I had depression.
When I later stumbled upon a book about a young girl with depression, naturally, because I had been told by an obviously completely objectively correct and credible source that I had depression, I bought the book and read it. In it, the girl starts cutting herself. Because she has depression, right.
So I started cutting myself. Because that’s what young girls with depression do. I knew that, because I read it in a book. And it wouldn’t be in a book if it wasn’t true.
The drugs didn’t work, because you can’t selectively stop humans from feeling emotional pain, not really. And also, I wasn’t “depressed”, I’m just autistic. Rinse and repeat for every subsequent diagnosis and drug I received. I was struggling with what I was feeling, because my environment was not right for me, so neither were the feelings. I also felt profoundly powerless, being unable to change anything, which remains a trigger for me to this day, because when I was most powerless I was in the most pain and dysregulation of my life.
These days, when kids struggle with the experience of having much too big feelings in not quite yet developed brains in environments they have zero ability to change, they’re still plastered with the usual labels but there’s a new one in the mix, and it’s much more dangerous. And there’s a fucking reason it’s being applied disproportionately to autistic kids.
Children feel powerless in their developing bodies. And for girls, knowing what the end result will be and what that will mean for them in this world, it’s particularly terrifying.
For psychiatrists to sit a child down and tell them the huge, terrifying, overwhelming feelings of fear and pain and distress for which they have NO frame of reference are “gender dysphoria” because their bodies are wrong and need to be fixed, it’s pure unfiltered evil. Doctors are telling children that apples are footballs, except it’s worse, because naively asking if your friend would like a bite of your football is not the same as naively irreversibly altering your body.
Children trust doctors implicitly. Psychiatrists pathologise entire aspects of the human experience. Pain is a normal part of life. It’s not fun, sure, but without negative feelings there would be no positive feelings. It’s the same reason SSRIs blunt good feelings too, while trying to blunt the unpleasant ones. You just end up feeling empty, which is somehow worse. It’s the same circuits, the same pathways. We need to be reassuring people through pain, telling them they aren’t actually dying, and that it won’t always feel like this, they are not alone in feeling like this, and supporting them in any way they need until they get through it.
Instead we pathologise them and drug them and throw away their trust, because they believed a doctor when he said a pill would take their pain away, even though it fucking can’t. So now when someone tells them, it’s okay, it’ll get better, it just sounds like a lie.
This individualisation of environmentally induced suffering tells people they need to change themselves to fit their toxic, oppressive environment. Fuck that. Change the environment even if it means burning it all down and starting again. No human emotions are wrong, no human bodies are wrong.
We exist, fully and as we are. We feel everything there is to feel, because we’re alive.
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bellaswansong · 11 months
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hi when i was 7 i was labelled as "gifted" (bullshit) (bad) and i spent the rest of my public school career in programs. age 9 i was moved into an all-day every day gifted program supervised by adults who told us things like "the normal rules dont apply to you" (what the fuck) (irresponsible) and "normal kids probably won't get you" (oh my god) (literal adults telling this to me, a 9 year old, surrounded by peers who had been told this since they were 6) (so i am sure you can imagine how fucking unbearable all of us were)
anyway i figure im qualified to comment on a selection of Opinions™ from the tags of yet another post by someone who remembers how annoying people like me were in school and has never moved on or considered how the adults responsible for that factored into things.
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hi! i had a 504 plan in high school. i should have had an IEP but the school refused to even consider that because i was in the gifted program. four of my same-grade peers also had 504 plans and there were about 15 of us. there were 400 people total in my grade.
the point: you probably know how the gifted program worked at your school, but none of this shit was standardised, so when you see a "gifted" kid on the internet, you have no way of knowing if things were the same for them. where i am from, most of the gifted kids were either diagnosed with Problems or refused sufficient accommodations based on their "gifted" label.
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so true go off. no comments here. i was not retaining SHIT, those books were a dissociation aid <3
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i blame my feelings of inadequacy and sadness on the fact that i was told i was inadequate daily because i failed to live up to a coercively applied label. i was not special and it was irresponsible to tell my parents that i was. if someone was affected by the "gifted" label to the point they are still talking about it, there is a high chance they were abused by parents and teachers. "imagine being a real adult and being affected by your childhood in a way that i can misinterpret in bad faith" "imagine being a real adult and having stuff to say about your abusive childhood" stfu about "gifted" kids forever <3
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it is the gifted program that sets the demands our parents enforce. it is the gifted program that told our parents they should expect miracles from us. maybe my parents would have abused me for my grades either way, but the shape of their abuse is inextricable from the trappings of "giftedness" and i am not going to pretend like none of their tools came directly from my teachers.
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true go off
anyway why is the validity of our experiences questioned based on the behaviour of high schoolers? a lot of us behaved sooo fucking poorly in school but that doesn't make it ok to assume all of us are overdramatic liars.
you have sympathy for the troubled kids who were hated by authority but as soon as someone with the same problems is singled out by adults and held to impossible standards you treat it like a reward when it's just a different form of abuse.
if you feel like youd rather withstand whatever i went through if it only meant you could access the opportunities i failed to grasp, that is your own damn business. abuse that would be worth it to you is still abuse.
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whitehotharlots · 1 month
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Hamster wheel
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My first experience with active shooter drills came the autumn after Columbine. I was in a study hall course in our high school’s cafeteria. My seat was approximately ten feet from the exit, then it’d be just a thirty or forty yard dash through the parking lot to safety. 
We were walked through the steps. This is what a shooter alarm sounds like, and here’s how it’s different from a tornado alarm and fire alarm. When you hear the shooter alarm, you need to get beneath one of the spacious, fairly high-topped cafeteria tables and place your hands above your head. Whatever you do, you should not attempt to flee.
This was insane enough that even the kids who usually nodded along to everything teachers told them expressed some incredulity. I asked if they were being serious. Like, for real are you being serious? The door is right fucking there. We can leave, instead of putting ourselves in a physical position that would make us much easier targets.
I was told that, yes, this is for real. And any more questions would be met with detention. Now, wait for the alarm and assume your positions. We all complied.
A decade later, I and hundred or so incoming instructors at a large university went through more advanced training--by this point it’d become a cottage industry, and they had instructional videos. We were told not to panic, shut the classroom door, instruct students to get beneath their desks, and don’t let anyone flee. 
The good news was that in so large a campus, the odds of the shooter targeting your particular classroom were quite slim. Goodie. And in this case, you’ll never know who’s a cop and who’s a shooter--cops like showing up to active shooting scenarios in plain clothes while wielding large weapons, and what if a good guy mistook you for a bad guy? Also, if the shooter does enter your room, you and your students should throw whatever you have at your disposal toward him, try and disrupt his flow. 
In a room full of putative intellectuals, no one bothered to ask how it was that if a man with a gun attempted to enter our classrooms during a mass murder event, we were supposed to be able to tell if he was a bad guy shooter who needed to be stopped, or a good guy police man who would not be legally liable if you spooked him and he killed you.
Of course, I thought back to my high school training. And it finally made sense: the point of active shooter drills is not to mitigate loss of life during a mass shooting. It’s to deflect liability to the institutions that offer the drills. If codifying these procedures actually results in more casualties during a worst case scenario, well... that’s a small price for legal protection.
Columbine is now the touchstone for retro-90′s era school shootings, but to me, at the time, it wasn’t the most horrible or gripping. It all seemed too random, too much like an amateurish media fabrication; a pair of shitheads doing what they thought they needed to do to get nationwide attention. 
The one that really scared me, at a young age, was the Westside Middle School shooting a year before. The Columbine shooters were disaffected high school shitheads, like myself, and I felt I could diagnose such a situation on my home turf beforehand and either defuse it or, at the very least, make certain I myself would be in no real danger. The Westside kids were kids, aged thirteen and eleven. They didn’t wander about the halls of their school picking off any random enemy. They had a plan. They gathered a cache of weapons beforehand and pulled a fire alarm knowing where their classmates would congregate after the building had been evacuated. They perched atop a hill and used the high ground to pick off their classmates and teachers amidst the confusion.
What got me about that shooting was the tactics. Literal children, even at the time younger than me, could somehow figure out the value of having the high ground and preying upon mild, manufactured chaos. You didn’t need to be a genius to be very good at murder. You just needed intuition, guns, and some very basic training. This shit could therefore happen anywhere, at any time, and for any reason.
Back to Columbine: it might be hard for younger people to grasp this, but way back in the ancient year of 1999 a school shooting that killed a mere dozen-plus was could capture the nation’s attention enough to remain in the headlines for months. 
The internet was still very young at the time; the ubiquitous online-ness afforded by smartphones wouldn’t been seen for another decade, and social media as we know it was still 6-7 years away. Nonetheless, Columbine was the first hyper-modern domestic tragedy. The coverage of previous school shootings focused primarily on the event itself, with minimal attention paid to the shooters’ backgrounds and motivations. Like nearly every other tragedy that proceeded it, Columbine was used a backdrop against which preexisting and mostly unrelated culture war battles could be litigated. 
My, how the narratives flowed. The shooters were godless, perhaps even satanic. They were so incensed at their low placement on the social totem pole they exacted horrific revenge against the popular, god fearing masses. Before taking the pure and virginal life of an especially sympathetic, blonde victim, they mockingly asked her if she truly believed in our lord and savior. She was martyred for her affirmative response. 
This, we were told, is what happens when the natural social order breaks down. Marilyn Manson, Beavis and Butt-Head, dark clothing, loud music, divorce, feminism, homosexuality... these things are all connected, people! And if we as a society continue allowing for their proliferation, we can only expect more and more horror. 
None of the narratives passed scrutiny. The shooters were not disaffected loaners; they were relatively popular and Harris was an athlete. They were not bullied. They did not ask a girl if she believed in God before they shot her. They were not picking off the popular kids while sparing the misbegotten nerds and weirdos. They didn’t even like Marilyn Manson--their favorite band was the avowedly non-violent KMFDM, a group whose lyrics usually sound like something taken from a Dick and Jane book.
In spite of the thorough wrongness of nearly every aspect of the shooting’s coverage, Columbine remains the template for how we process acts of mass domestic violence. There’s no shortage of cultural grievances on either side of aisle, and zero popular or political will to question why it is that a society so inured to needless and manufactured deaths might keep suffering these paroxysms of horror whose targets and scale grow increasingly profane with each passing year. Like every other social problem, the causes are always obvious, always wholly subjective, and yet somehow always just beyond our capacity to control.
The vulnerability is inevitable. Always has been. The only thing preventing the people you pass on the street from ripping your throat out is a shared sense of human connection that was once so basic it didn’t need to be enunciated but now seems like a quaint illusion, perhaps even a malignant trick, a sheet of wool pulled over our once-naive eyes that prevented us from understanding the evil depth of those whose cultural and consumer preferences do not align with our own. The fact that this sort of petty, superficial dehumanization appeared to be driving factor of the initial shootings is ignored. We do not possess the moral bandwidth to acknowledge that we are living in the world idealized by the likes of Eric Harris and Dylan Kleibold. 
The terrors keep coming. Our responses make us dumber and more hateful. Our preparations render us much more vulnerable to future horror. The wheel keeps spinning. It will never stop.
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poppyandzena · 1 day
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Yeah, Saige is very done for me at this point. Her willingness to editorialize the narrative just to support her abusive partners is disgusting.
Saige. Read the doc. Actually read the doc. Your words make it clear you didn’t. Because everything you say is barely applicable to what Spawn went through.
“I exchanged harsher words with my ex-spouse on occasion.” Yeah, and I’m sure Zena and Poppy did too- sorry you can’t have voice recordings of everything. You think Poppy/Zena would admit to harsher? Or even fully recognize it? If I recall, your own partners admit to making Spawn cry on multiple occasions. They just paint the story as “oh they cry in such a way to make me disassociate. So manipulative.” Hmm, bo red flags? To blame their kid for being driven to tears from their actions? Alright. Sure, whatever you say, Saige.
“If drawing boundaries and setting expectations is abuse, idk how you function with others.” This is just proof you didn’t read the doc more than anything. If you think having narrow (less than 10 minutes in some cases) windows for bathroom, food making, JUST GETTING WATER is boundaries and expectations, then you are delusional. And, more importantly, If you think ‘the kid’ should have to follow expectations/boundaries, but Zena and Poppy shouldn’t have to (the document makes it clear they didn’t- they skipped on dishes/chores, took up the kitchen way longer then Spawn ever did, and more), please detail why for me. I’d love to hear THAT excuse.
“I suppose it was abusive to have to check in before making purchases that weren't already budgeted bc they kept spending our income on shit we couldn't afford.” No, that’s not abusive, and also proof you didn’t read the document either. There’s a huge difference between ‘the kid’ and your ex/you- the kid had their own bank account/job/trust fund. That was only their money. Not Poppy’s. Not Zena’s. Your ex and you? Joint money, most likely. If Spawn was on their bank account/using Poppy/Zena’s money to buy things? Yes, completely reasonable to monitor and discuss buying things. The kid’s own money? No, Poppy/Zena had literally 0 rights to control that. You would tell a 18 year old that if their parents are trying to control their kids spending- you’d say “fuck them” I bet- you should in most cases. Why not Poppy/Zena’s kid? Literally just because it’s Poppy/Zena? The only way you could argue this point at all is if you could prove, actually prove, that the kid spent enough that it affected Zena/Poppy (by forcing them to cover for rent, utilities, food, something on Spawn’s behalf).
"Saige Alexis was an abusive spouse bc fae asked her spouse to do things for themself & not constantly expect faer to do everything for them” Saige. Just scroll through until you find Spawn’s chore list for one day. You articulate to me what is POSSIBLY left for Zena/Poppy to do. Spawn did everything FOR Poppy/Zena. Your precious partners are the ones that could afford to do more for their kid WITH A LITERAL, DIAGNOSED HEART CONDITION
I notice a distinct lack of mention of internet restriction. So just because they have physical and mental disabilities, Poppy and Zena had a right to completely restrict internet access? Restrict Spawn from friends and support systems? Reminder- Spawn is an adult that was paying bills too- paying for that internet. But they were still allowed to be punished and have it taken away completely? I have a feeling you and your ex spouse never turned off the internet for each other. “Oh but Spawn had a hot spot.” 10gb. That’s literally nothing. If it was enough to do anything? Spawn wouldn’t have had to go to the library for job applications. So please, give me an excuse for this one this time. Love to hear it.
Just… Saige, either actually read the document, or stay in your fucking lane. You talk a big game about not being believed on your abuse and experiences yourself, but when there’s an abuse victim that’s right there, right in from you, basically begging to be believed- you continue to just blindly believe your partners. You’re no better than everyone you have villianized for not believing you.
You don’t deserve awful shit to happen to you as you are a fellow human being. But you don’t deserve to put victims names into your mouth and minimize their stories just to try and validate your path and make yourself feel good about your life choices.
Read and actually learn or go away, Saige. Live in denial about your choices, or bother to learn your partners may not be these perfect, do no wrong people they try to pretend to be.
^
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aibidil · 2 years
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A lot of people like to talk big shit about how self-diagnosis and self-treatment of medical problems using internet research is the height of narcissistic internet absurdity and an example of millennial and gen z women letting the internet rot our brains
Meanwhile
A friend of mine with a dad, brother, and two kids formally diagnosed with ADHD and a lifetime of symptoms finally went to get a diagnosis for herself and was told that her problems were due to being unhappy in her marriage, not ADHD
A friend of mine in an excruciating flare of chronic pain including recovery from a vulva biopsy was asked by a doctor if she'd tried yoga
A doctor once told me that I should go ahead with a radiation treatment that wasn't indicated for young women because "well, it'll probably make you infertile, yeah, but you'll have enough money to do IVF in like ten years so that's ok"
Doctors routinely prescribe antibiotics to breastfeeding moms who have thrush even though antibiotics make fungal infections worse
Every new doctor I tell I have EDS asks me to do the hypermobility party tricks because they want to see them, even though they should know that doing those movements isn't good for my body
Doctors refuse to advise parents to give their constipated kids enemas, one going so far as to tell me that it would give my kid psychological issues, blatantly allowing a homophobic fear of penetration to stand in the way of proper medical care for kids who don't respond to miralax
An old man obgyn once told me, when I informed him that I was going off the pill, that he was sure he would see me soon, because I would change my mind because "women are happier on the pill."
Girls with autism and adhd are completely underdiagnosed and parents' concerns dismissed because the girls are too smart or too good at masking
I have friends whose doctors will refuse to even discuss treating infertility until they lose a certain number of pounds, quite literally refusing medical care on the basis of weight
Sure, there's a lot of misinformation on the internet, and you need to be careful and sift through it all. And at some point you'll need the input of doctors and tests to confirm your hunches, etc. (Which you may only have access to if you have $.) But how can you honestly look at this situation and NOT think the only solution is for us to research everything ourselves? To diagnose ourselves? To figure out what the best-practice treatment is so that you can question suggestions? When misogyny is so rampant in a Healthcare system, how can women ever make sure we're cared for properly? And if you're also poor, or uneducated, or fat, or bipoc, or trans, or a non-native-English speaker?!?! FORGET IT
I'll be over here in my internet groups where women put in countless hours compiling medical research with citations and sharing health conditions and treatments and experiences. Because the village witches have always been the ones to figure this shit out and also the ones to get blamed whenever something goes wrong—only now the village witches are compiling 100-page detailed guides on Facebook groups on how to combat iron deficiency, while the doctors refuse to even test our ferritin levels. I'll brave the medical offices when I need to, armed with my advance research to combat the bullshit I will inevitably encounter as I try to access to care I need
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big-boah · 2 years
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Disability Pride month is almost over, and I wanted to share my story about my own experiences with disability.
I have autism, ADHD, TBI, PTSD, deafness, and a few others! 🤟
Under the cut:
Here's my story:
When I was born, the doctors gave my mom drugs to cause contractions because I was sleeby and very late, and it wasn't until my mom almost died that they found out I was in the wrong position and couldn't be born naturally, while also being choked by the cord. (I was covered in bruises until I was like, 2.) I sustained a mild TBI from that and I was lucky I guess, because it could've affected me differently. (My mom also didn't know she was pregnant for a while and both parents had/have substance abuse issues. I had a rough start lol)
As a kid, I started reading and speaking very early, but I would only talk about things that I cared about/infodump. I clearly had attention problems--I couldn't focus on something unless I was absorbed by it. I had meltdowns because of sensory issues regularly. I also had a speech impediment and a weird accent that I got speech therapy for for a year.
My parents were told I was likely autistic when I was about 5 or 6, as I would only show 2 emotions: unabashed joy, and meltdowns. Otherwise I just...look angry lmao. I went through a lot of bullying in school and ended up being diagnosed with depression with generalized anxiety disorder by the time I was 11.
I've always had horrible coordination issues/apraxia/dyspraxia and I still struggle with it daily. I've broken so many bones y'all 😅
I was diagnosed with autism and suspected ADHD when I was 13 and again my parents did nothing with that. The school offered services because I was struggling, even though we were a low-income family in a small low-income school with grades K-12 in one building they did what they could to help. I was in special education classes as well as advanced classes at the same time until high school when I switched to all advanced/college level classes. One therapist at school helped me learn ASL to deal with the speech generation issues and I am forever grateful for that.
I've been writing stories since I was 6-7ish and writing to communicate was my favorite. By the time I was in middle school I learned to mask, and I studied people and psychology obsessively so I could understand why people did things. I didn't have any friends until this time although I did try (but no one else wanted to pretend to be a dog or a mage or play DBZ with me, well fuck you too! 😜)
My parents tried to get me to be normal so they forced me to join a sport when I was 8. An dyspraxic 8 year old playing softball lmao. I hated it. My dad wound up coaching the team 2 years in, because I was getting bullied BY THE OTHER DAD COACHES hahaha. I was forced to do that for 7 years.
I joined the bowling team in middle school of my own accord, and ended up being like the "backup team" where it was literally 3 of us from the special ed class 😂but I loved it! I got to hang out and bowl and everyone was really supportive there. I made some good friends for the first time.
My parents forced me to get a job and pay rent starting on my 15th birthday and of course I started working at the mall, on Black Friday, in retail. I am great at masking in very short bursts, literally just acting a script, and this is why I only feel comfortable leaving the house if I'm in character 😅So job interviews have never been too difficult thankfully. I had to get out of the whole abusive house situation ASAP so I started full time at an auto shop on the corner of my street the same time I started college, bought a used 2-door black Pontiac Grand Am from some guy on Craiglist with my own money, and moved out when I turned 17. I moved in with my best friend at the time who was also autistic, into a house we were renting from a friend's mom who was in the military.
I started experiencing chronic pain around this time, and had my first Meniere's flare up the first month of college. I was diagnosed with Meniere's at 18 as well as migraines, but my dad and grandfather had the symptoms start around the same age and they were never diagnosed, it was just considered "genetic hearing loss." Basically I have flare ups where I get too dizzy to sit up and my ears go out completely, then when they open back up it's never the same as it was before the flareup. It's been 10 years of this and I'm completely deaf in my left ear and half deaf in my right ear. I wear hearing aids and without them I can't really understand sound, and because of the nerve damage I usually can't tell where sound is coming from when I hear it, which is...an experience lol.
When I was 23, I woke up one day with a huge blind spot (scotoma) in the center of my left eye. I still can't see out of it. I started having other nerve issues in other parts of my body, they did a bunch of tests and found significant weakness in my legs which were also spasming, and all that improved over a year. I am still in the "we have no idea" zone for MS, after MRIs showed possible lesions but it would explain a lot. 🤷🏻‍♂️They told me it could be fibromyalgia or a virus too, but who knows at this point. Just a lot of inflammation.
I personally think a whole lot of this is caused by burnout. The timing is suspicious...
When I was 25 (2019) the nerve issues came back with a vengeance and it corresponded with an extremely stressful job situation. I went through the same tests, which were all inconclusive, again. I have extreme pain in my hands, hips, and feet during these flareups where I can't walk at all or sleep or move, and my ankles will go so numb I get drop foot in both feet and have to wear braces. 😅Eventually the nerve inflammation heals and it takes a few months, but its never the same after.
During this time I also experienced a mental health crisis, SI, and a rapid decline in executive/cognitive functioning due to burnout, because I'd been working full time for 8ish years at that point and autistic burnout is a real thing. I haven't really recovered from that honestly. Which makes work and being alive change to "Expert Mode" from "Hard".
In April 2021, I fell in the shower and sustained a skull fracture w/ moderate TBI. I am much more emotional now than I was before the TBI, my memory is worse, and my migraines have been worse since.
I can't shower unsupervised anymore. I can't do most things unsupervised except work and drive. (I may have issues, but I have always been a damn good driver! I honestly think it's because I played Grand Turismo with my dad's pedal and brake set on PS 1 for years!)
Even before all of that stuff, I knew I could never live alone. I've always lived with friends who knew my situation, and I moved in with my husband 2 weeks after we met and we've been living together since. (10 years now!) I can't do a lot of stuff like cook or use scissors or lift heavy stuff, and I have meltdowns where I will hurt myself without meaning to, it's just always been that way. I can't go out on my own either except for short trips like appointments, due to the fact that I will completely dissociate when I'm overstimulated and my brain function just ceases to exist. I get stuck often (autistic catatonia).
I am now 28 and I'm hanging on to full time work by my last thread. I am grateful I work from home doing software support, but any kind of full time work gives me burnout, which turns into inflammation and physical stress, which makes work harder, etc, it's a lovely spiral! Therapy has been helping me a ton. I've been in all kinds of therapy of my own accord over the last 10 years, and I currently work with an occupational therapist and a therapist who specializes in neurodivergent adults with PTSD.
Without working full time I can't afford therapy and my long list of meds that keep me functional (I can't work without a VERY delicately balanced cocktail of stimulants, benzos, hormones, antidepressants, and THC. I absolutely HATE this with a passion, if I didn't have to work full time, I wouldn't need all the drugs.) There's going to be a day where I wake up and cannot work anymore, and it'll be sooner than later. When that day comes, we'll just have to move to somewhere less expensive and/or back with our wonderfully toxic families. /s
(That's what being disabled in America is like when you're white and have "level 3 autism" and come from a low-income family with many substance abuse problems.)
My husband is neurodivergent too, he's autistic and has ADHD. He can't mask his stimming much, and he's not very smooth socially (its adorable) but he doesn't have the executive function difficulties I do and he does not have apraxia, we're all different! I always get "fake mad" at him because he does things so perfectly the first time, like making the bed or baking or even wiping something off I'm like whoa 👀. It makes me ANGRY 😠/s.
Whatever, he's lucky he's cute.
I can't end anything on a depressing note so I will say that I've grown a lot as a person just in the last 2 years especially since the PTSD diagnosis, and my relationship with my partner is a miracle and I don't believe in that stuff. He has always helped me with everything, selflessly, since day 1. (He's the reason we haven't had to hire any outside help yet, he does the supervising and I don't mind one bit! 🥰)
Writing has always been a very cathartic activity for me, and I started doing a journal "as Vegeta" as a way to help my anxiety. Those journals are being stitched together into my fic on AO3 called "Chances" (linked!) which is goofy self-projecting fanfiction but Vegeta and Goku's characters are literally just me and my husband, 1:1. 😂He learned ASL for me, and we always have a blast in our little corner of the world. Our entire mission in life together is to just have the best time possible, responsibly, because life is short.
But yeah that's my disability story! I can't write anything short so if you made it to the end, here's a cookie 🍪and 🤟. If you're my internet friend, maybe this will help you get to know me better!
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adorbsies · 4 months
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whyre you faking/saying you have osdd when you dont??? you always were a singlet then all of a sudden when you know other systems youre a system?? stop taking away from system spaces. you arent a system, you dont have trauma and youre as bad as the 'non-traumagenic' systems. how many systems do you know? suddenly youre a system??? dawg. you aint fooling anyone fr. you dont have osdd or adhd or npd or bpd or ocd or anything. you want attention. you and rei, and 'meruru' or whatever that whorish bitch is called are just as bad as eachother, faking being a system for attention. systems are traumatized beings, not fakers like you. do better next time.
this is a copy pasted message that u sent to @/wifelita and @/lustyra
do you know this thing called "hearing other people's experiences and then realizing that it matches your own"? because ur using the same rhetoric that lgbtqphobic people use by saying "suddenly everyone's identifying as lgbtq!"
"you don't have trauma" how do you know that? how do you know what 6 year old me went through? what happened to us when we were a fucking kid? we don't have to tell you every detail of our trauma for you to suddenly see us as valid.
i've had system friends since before i was on tumblr. i never thought i was until i started reading experiences of those who were systems. i still don't share a lot of experiences with other systems due to me most likely having osdd - 1a rather than anything else. osdd - 1a has such a small , miniscule community in comparison to did and osdd - 1b.
my sister is a psychologist and we ' ve had countless discussions about the likely probability of me having them and the possibility of me getting diagnosed when i am older and out of our house!
you ' re right , i do want attention! but not by faking medical disorders. these are serious things that need to be taken seriously. which is why i spent countless hours doing research and talking to people with these disorders ( which included family members. ) to make sure that my symptoms were something that others who actually had the thing experienced.
"systems are traumatized beings" yeah , i am. i don't think i'd literally start crying or having anxiety attacks over the smell of alcohol or my dad being drunk without trauma.
people saying they have stuff or treating themself as if they have certain disorders usually HELPS people cope in day - to - day life , believe it or not , even if they don ' t actually have the disorder! so , idk what ur problem is with people trying to learn how to cope
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Why are you atheist??
I’ve been staring at this ask for a while now since it’s such an odd thing to just ask and I was trying to figure out when I’ve ever mentioned religion so I can answer in response to what they’ve seen but I don’t know when I’ve mentioned it.
I’ve never been a person of faith, I remember in year 2 (6/7 years of age) I was at a school Mass and I realised everyone else around me believed what was being said whereas I thought what was happening was just another story. I’ve always took religious teachings as stories to teach morals and guidance but I never took them literally.
I used to attended a Greek Orthodox church on Sundays and I’m christened Greek Orthodox and I didn’t mind it because the priest was a lovely person. He would say things like Science is the pursuit of understanding Gods creation and he would talk about how important education is. But the thing that stood out to me was he once said being trans isn’t a sin, it’s the journey God planned for that Individual. So when I was younger I wasn’t aware of the more homophobic and transphobic sides of religion.
It wasn’t until I started attending the Catholic secondary that I realised that some people used religion to back up ideas of hate and I became very anti Christian and stopped attending church because as a young Queer kid the bullying and being told I’m going to hell all the time really got to me.
My mum also became very unwell, she has a chronic illness amongst many other disabilities so I also thought if there is a God he doesn’t care because why would he make a child watch there mother slowly die and loose her mind and become abusive.
I loved talking to my friends about their religions though, I’ve always been fascinated with beliefs and faith because I’ve never had any. I partook in Ramadan one year to support my friend who was finding it hard and their family invited me to Iftar and I really respected how important their faith must be for them to do this because it was very difficult. Another experience I won’t forget was watching my friends mum create a Rangoli because she put so much care and attention into it and it is still one of the most beautiful things I’ve ever seen because of that care that went into it.
But it wasn’t until I was 17 I started recognising not all religious people are oppressive, some people use it for oppression but if you take people individually who believe in it that’s not a bad thing.
But there are still things I don’t like, for an example at my secondary we were put into religious houses and mine was house Vanier, turns out that guy was an awful person. His name is Jean Vanier if anyone wants to look him up but it’s just disgusting. Also the priest at the Catholic Church closest to where I live was found out to be preying on children, I have no idea what happened to him in the end but it was a big deal in my town. I also live near some Jehovah’s witnesses who for a month straight harassed me after pride because I assume they saw me coming home with pride face paint and stickers on and I had leaflets about sinning coming through the letter box constantly, and even now they still bang loudly on my door to preach when I’ve explained me, my mum and dad all have diagnosed ptsd and find it distressing. My RE teacher also told our class how he pressured his friend who was SA’d into keeping her baby and he was so proud of himself and it made me feel sick, he did loose his job because he told a student they’ll die and go to hell if they take the pill even though they were taking it for medical reasons.
That’s the part of religion I hate, it’s those individuals I hate. I don’t hate religion or people who practice religion but I hate the fact those things happened.
One of the kindest adults in my life was the school Chaplin, she told me she prayed everyday for my mum to get better and she prayed for me during my exams. I spent a lot of time in the chapel because it was quiet when I was having panic attacks and she used to just sit with me and talk me through them.
I’ve lost track of what I’ve written but
I’m not anti religion. Me not being a religious person isn’t anti religion. I’m anti people using religion as an excuse to be horrible to others.
I’ve just never had any sort of beliefs, in my mind everything is just a coincidence. I don’t believe in an after life, ghosts, superstitions or anything like that either. But that’s who I am and I don’t think that should offend anyone. But I also know I could be wrong and I can’t tell anyone their religion is wrong or right because I simply don’t know that.
I think I prefer the term agnostic (a person who believes that nothing is known or can be known of the existence or nature of God) over atheist because it’s as simple as I don’t know but I don’t think anyone is wrong for having faith.
But also I want to add I’m a white person talking about religion and my experience, all over the world people have different experiences so it doesn’t actually matter what I say. I’m just answering an ask and if you ever want to talk to me about religion I’m always happy to.
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Okay so I had a productive but slightly frustrating conversation with my therapist last week about not wanting her to call my mom a narcissist because it worsens our inner conflict and polarization and doesn’t make space for us to develop a more integrated view of our mom and our experiences. Cool. Went fine, she heard me, she shared some shit about her own mom and how she feels her mom is a narcissist so maybe she’s projecting but she assured me she heard me and won’t do that. Cool. Annoyed at the oversharing and countertransference but whatever. As long as she understands.
But then today I was processing with her about how two of my siblings came out of our childhoods with such different coping styles than me and how that’s been really hard for me because they’re on paths that are. Really not where I wish they were. I feel a lot of grief and sadness and frustration. It hurts. And as I’m describing these siblings’ behaviors, both in childhood and present day, she proceeds to call my brother a psychopath and said my sibling’s anger outbursts when they’re triggered seem to be coming from a narcissistic place.
And I just. Like. What? Didn’t I just tell you labeling shit like this makes things worse for my system? Didn’t we just talk about this? Didn’t I just set a boundary about this with my mom? I don’t understand. I did not initiate using this language for them and while yes my brother is kind of a scary person who has done some really fucked up things to my younger siblings in the past, I would prefer she not label him as a psychopath when I’m not using that language? That’s not helpful for me. And my sibling—I’m hella protective of them. Like I will FIGHT. Don’t go saying my little traumatized dissociative bb sibling is being a narcissistic abuser to their partner. I WILL fight you. You don’t know them. Fuck off.
Ugh I’m literally shaking. So we decided to write an email because I didn’t get to say everything I wanted to say in the moment because I was so caught off guard. I just made a blanket request that she stop labeling my family members with cluster B traits or diagnoses. I said it’s most helpful for me when I’m able to take the lead in identifying and choosing the words and lenses that I want to apply to my family and my experiences. I said cluster B labeling is NOT helpful for me. Some parts might use certain words to describe experiences with certain family members, and they can do that but our therapist cannot.
I said that I’m hoping she can understand that this is not a helpful lens for us. I explained that it makes me defensive and like I gotta go to bat for my family and that can derail the session and really destabilize me. I tried to be really polite about it and just use “I” language and stuff. I tried to use all the right words and tone. She hasn’t replied or acknowledged it via text which is pretty unusual and could mean she’s having feelings about it but I don’t think I did anything wrong. I think it’s okay to say this isn’t working for me and this isn’t something I’m gonna budge on.
I hope she responds well and also that I don’t have to wait until Monday to hear anything. That would suck SO much. We’ll manage but this shit is just so hard. So scary. We just had a kid part come out and cry to our wife that they’re scared our T is gonna hurt us and they said that our wife is the only person they can trust. And I’m glad our kids have our wife but I’m sad that they feel so scared and threatened. I hope our T will pull through and be able and willing to change what she needs to change.
In the meantime, time to go practice some internal co-regulation with these scared kids so hopefully we can sleep soon. Gotta reassure them that even if our T invalidates our feelings and makes us feel unsafe, I will always validate them, and if she doesn’t understand us, I will understand them, and if she leave us, I will never leave them.
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When I was a kid teachers always yelled at me and told my parents I needed 'special' attention and I needed to be diagnosed with some sort of mental disorder when I was like 4, turns out the teachers were just terrible because after SEVERAL visits to the doctor the reason I was do 'hyper' was because I was a LITERAL child
Now that im a lot older I do know that I am a lot slower then most kids, in terms of learning, I tend to switch hobbies very fast because when I try to learn it gets very difficult so I give up and move onto something else, besides art at least. Iv been to the doctor obviously a lot more and from what they said I am not diagnosed with ADHD, ADD, Autism or anything on the spectrum, I mean it doesnt help that i have depression, anxiety, and an ED so I wouldnt be surprised if it got overlooked lol
Teachers, at least in my experience, to nitpick people like me who are just slower then others but I did have a few teachers who actually cared and helped when I was struggling so it restored a bit of hope in me lol
I’m so sorry you had to deal with that. I also went through similar situations when I was younger and it wasn’t until High School/college that I actually learned to love learning.
I’m really not a fan of the school system in the United States at all. It’s very much geared towards results on tests rather than actual comprehension. They test kids 4 times a year here and if one test is low, suddenly you are miles behind, so imagine if you have special needs or even if you just don’t comprehend the material.
I’m happy to say that I requested a meeting for my kiddo and we sorted a lot of stuff out! They were taking recess away as a punishment and were wondering why the kid was upset 🙄
There are a lot of good teachers and I completely understand that teachers aren’t paid NEARLY enough here which isn’t right. And the thing is I know my kids isn’t alone either because school is hard!
Not me over here struggling with 2nd grade math 😂
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intersex-support · 2 years
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Would you be able to look at my symptoms and point me in a direction? Im afab with non-ambiguous genitalia, but I've thought something could be off. My Dr says that we can't test for hormone problems because I need to perpetually be on birth control now, but I don't really know what to make of my reproductive health.
I didn't have a period until I was 18 yrs old. I never developed breast tissue until my highest dose of estrogen in my 20s and even then I have a small chest. When I started my period, it just never ended. Like I only stopped bleeding now, when I'm 27 and have had an IUD for a while. At first it was very heavy, but with sequentially higher bc doses it got lighter and is finally gone. After the first 2 years I had to get a blood transfusion because I lost too much blood lol and was fainting constantly. Even then it was a while until I recovered. I know I don't have haemophilia or a significant blood clotting problem (I have a minor one due to ehlers danlos). I know I don't have uterine cancer. They think I do have some endometriosis, but have told me the period is likely a hormonal thing. I don't have cysts on my ovaries as far as drs can see after multiple tests, and my current gyno (who seems the most truthful and good tbh) says that I probably just never ovulated really which is why it was perpetual. My first Dr to do an ultrasound came back and said "so you do have ovaries" which I've always thought was suspicious because it did not sound like a joke.
I had to be taken off estrogen because I have migraine with aura, and since I've got my mustache back.
I do have facial hair and more than average body hair, but nothing too drastic. I still have hormonal acne which I hate. I ask because I havent been able to find much about "late bloomers" and never ending periods without haemophilia. My Dr admits she doesn't know if it's PCOS, but said it's probably not worth testing because I don't want kids. Does this sound familiar to you? Would you know what tests to ask for?
I have a lot of health problems outside of this too, but it seems like this is separate. It may not be anything intersex related, but I don't know what it could be and it has been a source of some pain in my life because it did almost literally kill me without having any idea why this is happening lol.
Hi anon,
It sounds like you've been going through a lot in terms of health problems, and I really hope that you're able to find some answers. I'm not a medical expert so I can't really speak on what all the possibilities are, but I can speak about some things in the intersex direction.
It sounds like you've ruled out blood disorders, or at least blood disorders beyond your blood clotting problem with EDS. You've ruled out uterine cancer and I'm guessing you've also ruled out cervical cancer. Have you ruled out thyroid problems? That can be another possible cause or contributing factor. It does sound like your doctors have been evaluating whether or not you have an intersex variation, and I honestly think that it might be really likely. The fact that you have to be on consistent hormones to manage your period is really significant to me and I think that there's a lot of things that you've described that make intersex variations worth looking into.
Since you know that you have ovaries and you do experience a period, we can rule out a lot of intersex variations. What I really think you might want to look into is (N)CAH. I have NCAH, and I had a constant period. Literally would bleed for months, constantly, got severely anemic, and the only thing that stopped it was getting a progesterone IUD. I got my period when I was 11, had other clearer signs of hyperandrogenism, and went through puberty, so not quite the same as you, though. I also have some weird comorbid chronic illness things that might have contributed, but my constant period was the thing that basically got me diagnosed with NCAH. The fact that you have other symptoms like more body hair and hormonal acne is also a clue. It might even be possible that you have CAH (that's not salt wasting) that is one of the rarer types.
I'm not an endocrinologist and I don't know the specifics about what hormonal birth control makes what tests impossible, but I'm pretty sure there are some tests that should still be able to be done, especially if you are not on estrogen and are only on progesterone. The tests for (N)CAH are to get your testosterone levels checked, to get an ACTH stimulation test, and an 17 ohp level test. I think that you should still be able to get these done with a progesterone IUD, although I know estrogen can affect the ACTH stimulation test results. I'm not as familiar with how the other subtypes of CAH are diagnosed, but I know it involves testing responses to cortisol and also might require genome sequencing. PCOS is also basically diagnosed the same way as NCAH (some doctors are starting to see NCAH and PCOS as way more related than previously thought.) PCOS is diagnosed when everything else is ruled out and when two of these three things are present: hyperandrogenism, ovarian cysts, and oligo anovulation, which is basically irregular periods and difficulties with ovulation.
Honestly, if you hadn't said that you got an ultrasound done and that you had normal ovaries, I would have pointed you towards Turner's syndrome and mixed gonadal dysgenesis, because from your ask it sounds like you didn't start to go through puberty until you went on estrogen, and that really jumps out at me as something that Turner's syndrome could cause. Again, not as familiar with whether ultrasounds can malfunction, but I did just read this study that says that some people with Turner's syndrome had ovaries that appeared totally typical on an ultrasound. I really think you might want to look into getting an ultrasound again, or get a gonadal biopsy to see if you have ovotestes. This is a list of symptoms of Turner's Syndrome. To get diagnosed with Turner's syndrome, you would need to get a genetic karotype. If you have any hearing loss or heart problems, those can also be signs of Turner's Syndrome. Mixed gonadal dysgenesis can also cause some similar symptoms, and would be diagnosed through a genetic karyotype.
I also think something you might want to look into is another intersex variation called Follicle-stimulating hormone (FSH) insensitivity. This is rarer, and I know less about it, but basically, it causes ovaries to not work right, creating a lack of estrogen, can even cause ovarian failure. People with FSH insensitivity usually don't have puberty without hormones, like you described. I'm not familiar with what periods typically look like when people with FSH insensivity go on estrogen, so someone correct me if I'm totally wrong. But a lot of things you've described really line up, and it might be worth it to get your FSH levels tested. I think you might also need to get gonadal and gonadotropin levels measured to diagnose FSH insensitivity.
I will admit that some of what you're describing is more severe than what is the typical presentation of these intersex variations, but I don't think that necessarily means that it isn't possible. I could also totally see it being the case that some of your other health issues like EDS could interact with a possible intersex variation to worsen the symptoms. I can't say for certain whether or not you have an intersex variation, but I will say that this ask had a lot of things that made me really, really think that it might be a possibility. Like. even more things than the typical asks I answer on here.
Honestly, if it's possible, I would look into getting a referral to an endocrinologist who specializes in intersex care (probably the language they will use is disorders of sexual development). It can be harder to find doctors as an adult, so it might even be worth reaching out to an intersex team at a pediatric hospital to ask them for referrals, because I think that what you're describing is going to take a specialist to diagnose. Your symptoms in many ways seem very clearly intersex, but they differ from the typical presentations in a few ways that might challenge doctors. If you want to send in another anon ask with more specific information about your location, I'm happy to do research for you to try to find a doctor who might be an expert.
Seriously wishing the best for you, anon, and please feel free to reach out with any other questions. You really deserve answers and support in this journey, and you are welcome to vent, ask questions, anything you want in the inbox. Love and solidarity from the mods here!
-Mod E
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For the past few months my level of anxiety had been sky rocketing high.
Received the result of my cervical biopsy today which thank God came back negative for CA. Apparently, abnormal cell growth was detected during my cervical screening on November last year and my GP referred me to a Gyne specialist for further review and got diagnosed with CIN 3 or high Grade 0 cervical dysplasia which if left untreated can eventually lead to cancer.
Fuck me, I was overwhelmed with fear right at that moment when I was told by my Gyne specialist. God knows how much I am praying na sana even at my late 30s I could still conceive. Right there and then, on my own, I was told that I have to undergo LLETZ (large loop electrical excision) procedure where a large loop wire has to be inserted in the cervix to remove the abnormal cells and I’m not kidding when I tell you that it was bloody painful despite of 4 shots of regional anesthesia. I fainted and literally felt my heart pounding. But if I won’t be able to tolerate the procedure then I will be booked for OR table which I really don’t want as it would make me feel that it’s officially major. I remember biting my lips so hard during the whole procedure. I told the Dr that I wanna do it right away coz there’s no point on delaying if it needs to be done anyway and I just want to get over it. So it was done and the excised specimen was sent to lab for biopsy, which took painstakingly looong.
Three things na iniisip isip ko after that. First, my main concern is kung papaano ko sasabihin sa parents and sister ko if say I have cancer, I feel like I could easily process and accept it than them. It will break their hearts and that I’m not really sure if I can handle. We have lost one of our sister when I was a teenager and I don’t even want to relive what we went through after we lost her. My parent’s just don’t deserve to go through that pain and agony again in their life.
Second is, I feel bad for myself coz I am praying so hard na sana I would still be capable of conceiving in the future, honestly I don’t know when. I try to remind myself na di pwedeng just because I’m kind of desperate to have a baby is kung sino sino na lang. My children cannot choose their father but I can, not that Im saying Im perfect but hell no Im not nor nowhere near that but, I know what I deserve and as well as for my future children. I want to experience motherhood and seeing my children grow up and be a hands-on mum.
Third and last is Im grateful that Im insured, and that healthcare in the UK is free. Like literally you go in the hospital penniless but no worries at all dahil ni pence wala kang babayaran maski chemo, radiation or whatever therapies or even surgery that you have to undergo. How I wish na ganito din tayo sa Pinas. ☹️ Also, Grabe pala yung feeling pag insured ka, I didn’t realize how important it is not until I was almost get diagnose with Cancer. I mean if anything happens, the least among all the worries my family have to think about is money because I’m covered. It’s literally a security blanket considering that I am the 🥖 winner in the family.
I cant help not to overthink during that time. Ikaw ba naman kaya ang nearly diagnose to have CA. Inisip ko na ayoko magalit kay Lord because, as cliché as it sounds, I believed that everything happens for a reason, whatever it may be, hindi man natin maintindihan right at that moment, but eventually along the way, life unfolds itself. And I always tell sa lahat ng prayers ko na kahit ano pa man yun will ni Lord no matter how painful it could be, I know He knows better than I do, kaya dun ako. Let thy will be done. 🙏🏻
Quite a long read but yeah, my heart is full. ✨
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manicinnerthoughts · 1 year
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I realized today that a huge part of my issue is that I genuinely have no idea who I am. I don't think I ever really knew who I was. I adopted my brother's taste in music and my mother's love for art. The only thing I know for sure is that I am a black female with a shitload of trauma.
I didn't get to grow up with any black influences in my life. Never met my dad's side of the family, the only black figures in my life were my mom's countless boyfriends, and I went to all predominantly white schools.
I've always felt like I didn't belong anywhere. I remember when I was a kid I was constantly told I'm the whitest black girl they'd ever met. It didn't help that I was light-skinned, but that's not what they were referring to; they were referring to the fact that I didn't "act black".
We were too white for the very few black kids we knew but black enough for the white kids to ask us why we didn't live in the projects and the white churchgoers to ask us if we were adopted.
My mom used to think it was funny to say that she's blacker than we are because she grew up with all black people and went to predominantly black schools. Yet somehow didn't think it was important for her black children to experience anything other than whiteness.
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Another thing I have realized recently is that nobody knows me outside of the basic information: my name, where I grew up, my favorite color, my hobbies, and my favorite animals. Even my IRL friends couldn't tell you anything about my life, any genuine knowledge about me.
I want people to know me, but my adult life and my childhood have been 90% trauma and I don't even know where to begin to explain this shit to anyone. I mean, I guess I kinda did that above; I'd like to say that the issues surrounding my ethnicity and identity sums up my childhood trauma, but that's not even the beginning.
I guess it really started by being repeatedly ripped away from my family. I had been in 5 RTFs, 2 respite homes, 2 foster homes, and 3 outpatient facilities by the time I was 17 (which is actually when I was diagnosed with autism). On top of that, we lived in 4 different homes before I graduated high school so I quite literally moved around my entire life.
Imagine being 5 years old and having just been removed from your household for the very first time. Now imagine going through that regularly throughout your childhood. That alone fucks kids up.
My entire life consisted of being the new girl; getting used to new rules, adjusting to new personalities, struggling to make friends; making friends then leaving them.
That's a lot of change for an undiagnosed autistic child (or even an NT child) to go through.
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My life has been a majority of being abused and I genuinely have very few happy memories growing up. My mom has done a lot of fucked up things to me; she's called me racial slurs, thrown things at me, hit me, and even burned me, but none of that compares to the fact that she did nothing to protect me from her boyfriend (I'm assuming you understand where this is going. I don't want to go into detail) Instead of being a loving mother and breaking up with him to keep me safe she kicked me out a few months after I graduated.
That's how I left one abuser for another.
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I had just graduated high school & moved directly into a homeless shelter for a little while. Before I got kicked out I started talking to a guy I went to school with and he said I could stay with him for a while. I was so happy to get out of there that I said yes and I moved in with him.
I stayed with him for 8 years and during those 8 years I was raped repeatedly, held hostage, beaten, and he tried to kill me twice (I know a lot of you are probably thinking you could've just left, but we lived in a third-story apartment and he quite literally imprisoned me. I am also epileptic so I didn't have a license and no family to stay with).
To this day I automatically assume everyone I meet is going to hurt me. My friends have hurt me, my mom has hurt me, the man who claimed he loved me has hurt me. I genuinely fear getting close to people now to the point I isolate myself in a room.
I have tried so hard to heal from all of the shit I have been through. I'm afraid I'm stuck hating myself and everyone around me and I have no clue how to change my view of myself and my view on the world around me.
I know this has probably jumped around a lot and for that I apologize. This has just been me manically writing about shit I struggle to cope with.
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cummingforkylo · 2 years
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Hey man why are you being so mean to yourself saying things like "shut the fuck up" when you're talking about extremely traumatic things. Like bro you immediately apologize for your mom and excuse her over and over and over for treating you like absolute dog shit.
I'm sorry I literally don't give a fuck what her problem was at the time, she BRUTALLY, and I mean **BRUTALLY** abused you. None of that is okay. It's really interesting to me that you make sure the person reading that post knows your mom is like, totally okay now. Who, exactly, are you trying to convince? Us? Or yourself?
Additionally, have you ever gotten therapy? Like. You are blaming yourself, telling yourself how stupid you are, how you can't do xyz, telling yourself shut the fuck up... Bro you're literally suffering from trauma. I'd bet my life savings you have PTSD, if you haven't already been diagnosed. The fact that you couch this extremely horrific tale in "is it abuse?" makes me believe you've never talked about it been validated by this experience ever in your life, or if you have, it's not been often.
(I'd be willing to bet, also, that you're not actually bad at math. I bet, in fact, you're perfectly capable of it. But all of those circumstances surrounding math make it difficult for your brain to parse those signals. It has nothing to do with your capabilities.)
If you haven't talked to someone like a trauma therapist, I'd seriously consider it. A lot of people go through a lot of their lives thinking they have persistent depression and severe anxiety which like, sure, but the root is trauma. Might help to get that looked at.
I'm so sorry you went through those things as a child. It wasn't your fault, and you deserve love and compassion now, especially from yourself.
I’ve gone to therapy and talked about my mom some but i think a lot of it I didnt talk about specifically because i found myself like…constantly defending her to my therapist instead of just talking and it’s probably not because i want to excuse what she did. After years of blaming myself(even more than I already do?) i finally in the last like five years have been able to admit that it was her being abusive and not me being a difficult child. It took my brothers looking at me once and being like, “no, there was a period of our childhood that was straight up…bad.” for me to even recognize that all these times in my memory werent just like…me being a bratty kid and my mom dealing with me. And I think why whenever i talk about that stuff i have to like convince people she’s good now is because i’ve watched her change and i love her and have forgiven her for some of that stuff because i want to have a good relationship with her, and I do. But unfortunately in forgiving her i havent done nearly enough work to heal any of my shit about it.
I’m also constantly scared that even though what I talk about are literally just the memories I have that I have somehow exaggerated everything in my mind and i’m just bullshitting this. Like I KNOW these things happened, i have literal memories of it but even as I write them out I feel like I MUST be exaggerating because i’ve never talked specifics with my brothers and neither of them had it as bad as me.
I wouldnt be surprised if I have PTSD but i’ve never talked to a trauma therapist. My last therapist ghosted me so i’ve been very apprehensive to actually find someone again but you’re probably right. Talking to someone would probably help a lot of things.
It’s difficult, all of it, because I hate what happened to me and I’m upset about how challenging it has made some of this stuff in my life but I don’t hate her and I wouldnt want anyone to think less of her? Even if she deserves it in a lot of way. I dont know.
I reaally appreciate your message. It means a lot to reach out and offer real advice and such thoughtful words. I wish I was on here more so it didnt seem like I come to drop depression bombs and then just dip. It’s not what I intended this silly blog for.
💕
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aevios · 2 years
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Hey, do you know any good sources that could help with self diagnosis? I think I might have adhd but I don't know any good sources about it. Sorry if you don't know any! This just seemed like a good place to start 😅
Unfortunately a lot of like, official sources of information on ADHD and diagnostic criteria focus almost entirely on children. Tbh there actually isnt a super standard way to diagnose adults even by professionals. I've been officially retested and diagnosed various times in my life (for some reason they want you to get retested periodically or when switching providers even though it's literally an innate life long thing it doesn't magically go away but WHATEVER) and every time was at least slightly, if not significantly, different. Honestly sometimes the best resource available is to find spaces of other neurodivergent people and talk to them and get to understand them and their experiences. They can often paint a much more realistic picture than cut and dry diagnostic criteria from an outside neurotypical perspective designed with children in mind. I wish I had like, more specific suggestions or advice, but honestly I was diagnosed with ADHD as a kid and therefore didnt have to do as much soul searching and research to figure things out as folks who didn't realize they may be ADHD until adulthood. I guess I went through a similar thing with autism, so that's my frame of reference, but still for that it was less one specific research and more the combination of researching various sources and talking to a lot of autistic folks.
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