KuriGohan&Kamehameha
想死不能 - 想活不能
- Nov 23, 2020
- 1,740
Many times in my life, a couple people who were close to be would tell me in moments of anger that, "I'm not special, so stop pretending like I am" specifically in the context of my problems. Usually, people say this if they believe you are being arrogant/ think that you are better than others (which I'm definitely not, this girl right here is an disabled loser with brainrot, literally) but I find when I have expressed frustration about my troubles people either refuse to believe me because my issues are so strange and uncommon, or they're dumbfounded. And this includes so called professionals.
I'm well aware that my issues are uncommon, but they aren't entirely far fetched, I think. Yet, outside of this forum, I've hardly met any people in my life who understand what I'm going through, and this creates an incredibly profound sense of loneliness. I already struggle to relate to the average person not only because I am autistic, but also because enduring so much absurdity in my lifetime further removed me from what I view as the normal human experience.
One of the biggest frustrations throughout my life has been my desire to understand what went wrong in my life, and to remedy those failings. Ever since an early age, my life had been deeply entwined with psychology and psychiatry, as my family thought it would be the key to fixing me. Surprise, surprise, it just made everything worse. All of my physical health problems and traumatic experiences were shrugged off and downplayed for years while I was thrown on every drug cocktail under the sun starting from my early teenage years.
I was supposed to be diagnosed with ASD as a toddler, but it didn't happen until I was a teenager legally capable of making my own private medical decisions, as one of my grandparents decided to deliberately withdraw from the assessment process so that I would not be diagnosed. This meant that I spent my entire childhood being bullied, receiving no proper help, and left to fester with a speech impediment, bizarre behaviours, and developmental delays because I grew up in a poor, rural place where no one even knew what autism was (it was much more rare in the 90s and early 2000s) or believed that girls could have autism.
This experience is not uncommon, especially if you look into the sheer number of autistic adults and teenagers who were diagnosed later in life and struggled due to that delay, but the events that followed were. Having ASD has ensured that a lot of what I say won't ever be taken seriously by many people, because the manner in which I speak, my body language, gait, mannerisms, etc makes others uncomfortable.
Especially if you grew up in a culture like I did where people tend to be loud, fake polite, outwardly expressive with body language, dishonest, and social interactions have multiple levels of mind games and cues you're meant to decipher- I've never been able to mimic those expectations no matter how hard I tried. It's the gift that keeps on giving, because it ruins my credibility too.
My bizarre, autistic behaviour as a child masked the fact that I was molested. It was easier for the adults in my life to believe that I was a brat and acting out, I guess. The second time that I was getting continuously molested as a young teenager, no one believed me because the older guy who was doing these awful things to me was a popular and well liked student at my school. Even though he confessed to molesting me years later, he walked free of any convictions and disciplinary action, whilst I had to spend my entire adolescence being branded as that messed up girl who falsely accused a beloved young man in the community of sexual abuse.
Time and time again in my life I have been taken advantage of and made to feel like a mannequin or doll to be played with rather than a human being. I know that abuse and neglect are sadly not uncommon occurrences in this world, but I feel like I've experienced far more than a lifetime worth of them. For those of you who know what an ACE score is, I clock in at a 9/10. When I go into details about my childhood and young adult life, it has always left therapists speechless and unable to offer any meaningful sentiment. My case is so complex, convoluted, and full of ideosyncracies, that no one has ever been able to help me. And they never will.
It constantly feels like I was dealt a heavy handed punishment since day one, being cursed with the inability to truly relate to anyone. Perhaps, I could cope better if there were one or two central problems in my life, but there is such a complicated entanglement of complaints that simply can't be separated. I have cPTSD that doesn't respond to any treatment, I have autism, I have chronic fatigue, I have a structural defect of the brain, I have tumors and cysts that keep popping up in my ovaries, I have spinal disease, I have no family, I could go on and on. But my point is, there are few people in the same boat as me. Sure, I could find someone who shares one of my issues, but the others would perplex them since those troubles are completely unfamiliar to them.
It is an extremely hollow and soul crushing position to be in, when all you can do is shout into the void. Nothing in mainstream psychiatry or psychology resonates with me in the slightest anymore. Over and over again, I've taken medications that did not work, I've been talked down to and spoken to like a petulant child who knows nothing, I've read books about PTSD that gave insight into why I am how I am but offered no solutions to mend that innate brokenness, I've spoke to therapists who offered harmful and damaging advice or shrugged their shoulders, and it has left me permanently suicidal because I know there's no real help out there for people like me.
The sort of PTSD I have is so niche and under-studied that I highly doubt there will be an effective resolution in my lifetime, for my particular case. Documentation of abuse caused by medic professionals is scant and borderline non existent. As early as 5/6 years old, I was getting UTIs, masturbating, making fucked up "playing doctor" scenarios with my toys, feeling violated constantly, and mortified of any medical environments. You can probably guess why. It has now been almost 20 years and my PTSD is even worse due to the compounding traumatic experiences.
Every bit of conventional wisdom has left me with nothing. Exposure makes it worse. Doctors mock my pain and many of them refuse to even acknowledge that I have PTSD or that they could trigger me even though I have been diagnosed for years, they call it a "little bit of anxiety". They took away the only sedative that helped me if I was forced to be in a medical environment, for absolutely no reason. Supposedly I am an irrational and mentally ill person for being unable to trust them and feeling violated by this profession, when all evidence points in the opposite direction. I have no reason to trust an institution which has ruined my entire life.
I've been told multiple times by healthcare staff things like, I need to be forced to accept penetration, that I need to want sex with partners and am letting trauma rule my life, I should be made to use dilators to make myself accept penetration so I can let them penetrate me against my will (for a test I said no to about 10 times), that I need to be forced to go to exposure therapy and get over it until I am desensitized, that I'm making up my physical health problems, my concerns are just anxiety, I don't need tests I just have boy problems, I am not trying hard enough to get better, everyone else can do this, etc.
Asserting any sort of boundary gets me treated as if I'm an insane malingerer. I've been suffering from chronic pain and poor health for years and these awful doctors and nurses kept gaslighting me and making me think I was lazy and not trying hard enough to improve my situation. Well guess what, my brain is deformed and protruding into my spine! I have horrible dysautonomia symptoms like Raynaud's, brainfog, non stop fatigue, neuropathy etc and everyone told me for years I am just depressed, lazy, and not trying to get my life in order. Nevermind the constant accusations that if I were really sick I would endure any and all pain and humiliation ad nauseum to search for answers, even if there isn't a true evidence based reason, because that's what real sick people do.
Additionally, I have scoliosis, degenerating discs, and inflammatory lesions of the spine likely caused by an autoimmune disease called AS, and the pain gets worse and worse as time drags on, yet they REFUSE to treat me or give me any sort of pain management because the NHS GP doesn't know about any of these rare conditions, typed them into google, shrugged, then told me to just exercise. I begged and pleaded with them, emphasizing I can barely do anything because of how bad I feel everyday, and they don't care. It makes me want to scream. When the pain is bad, it is excruciating, and activity is almost always guaranteed to cause me pain. Of course it would, I have a hole in my spine.
I feel like I'm living in a half-life. My chronic conditions are so bad I spend most of my time in bed, and the rest forced to push myself beyond my limitations. Ever since I had surgery a year ago to remove the tumors I had in my reproductive system, I have been even more of a shell of my former self. Throughout my melancholy, painful childhood, I was always told by therapists that once I turned 18, the world would be my oyster because I would be free to do whatever I wanted, with no more abuse and harassment from my family or my classmates. Yet, it's been the complete opposite. There are so many things I want to do, and CAN'T. It's a new type of existential horror to have the urge to create and yet your mind is this completely hollow and empty thing, unable to conure up anything creative or coherent and your vision permanently swirled, a permanent heaviness all over your body and struggle to stay awake.
When people actually do believe me about my sorry excuse of a life, they look at me with pity rather than empathy. Quite a few people I've been friends with in the past have told me that my life is a horror show and they can't fathom how I manage in the day to day. People just don't know what to say, and no one has answers for me. I would not want to kill myself if there was a way to fix my life, but there simply isn't. I've been down every rabbit hole that exists, including alternative treatments like psychedelics, supplements and herbal stuff, changing up diet, and it doesn't make one ounce of difference because I inherited these tricky, obscure fucking diseases, alongside being constantly neglected and abused until the point I became completely emotionally numb. I don't even know if I'm capable of loving another person romantically ever again.
All I wanted was to be normal, and if that wasn't in the realm of possibility, then maybe whatever evil deity or entropic force out there would be merciful and grant me normal problems, with normal solutions. Instead, I am this completely broken mess of a thing, no longer human yet forced to parade around as if I am. This will be the reason why I ultimately end things in the coming months. Believe me, I did try to make something out of the circumstances I was given. I really did try.
but now all that's left is the bus. There's no way to count the number of times I begged for help, only to realise it doesn't exist for a person like me.
I'm well aware that my issues are uncommon, but they aren't entirely far fetched, I think. Yet, outside of this forum, I've hardly met any people in my life who understand what I'm going through, and this creates an incredibly profound sense of loneliness. I already struggle to relate to the average person not only because I am autistic, but also because enduring so much absurdity in my lifetime further removed me from what I view as the normal human experience.
One of the biggest frustrations throughout my life has been my desire to understand what went wrong in my life, and to remedy those failings. Ever since an early age, my life had been deeply entwined with psychology and psychiatry, as my family thought it would be the key to fixing me. Surprise, surprise, it just made everything worse. All of my physical health problems and traumatic experiences were shrugged off and downplayed for years while I was thrown on every drug cocktail under the sun starting from my early teenage years.
I was supposed to be diagnosed with ASD as a toddler, but it didn't happen until I was a teenager legally capable of making my own private medical decisions, as one of my grandparents decided to deliberately withdraw from the assessment process so that I would not be diagnosed. This meant that I spent my entire childhood being bullied, receiving no proper help, and left to fester with a speech impediment, bizarre behaviours, and developmental delays because I grew up in a poor, rural place where no one even knew what autism was (it was much more rare in the 90s and early 2000s) or believed that girls could have autism.
This experience is not uncommon, especially if you look into the sheer number of autistic adults and teenagers who were diagnosed later in life and struggled due to that delay, but the events that followed were. Having ASD has ensured that a lot of what I say won't ever be taken seriously by many people, because the manner in which I speak, my body language, gait, mannerisms, etc makes others uncomfortable.
Especially if you grew up in a culture like I did where people tend to be loud, fake polite, outwardly expressive with body language, dishonest, and social interactions have multiple levels of mind games and cues you're meant to decipher- I've never been able to mimic those expectations no matter how hard I tried. It's the gift that keeps on giving, because it ruins my credibility too.
My bizarre, autistic behaviour as a child masked the fact that I was molested. It was easier for the adults in my life to believe that I was a brat and acting out, I guess. The second time that I was getting continuously molested as a young teenager, no one believed me because the older guy who was doing these awful things to me was a popular and well liked student at my school. Even though he confessed to molesting me years later, he walked free of any convictions and disciplinary action, whilst I had to spend my entire adolescence being branded as that messed up girl who falsely accused a beloved young man in the community of sexual abuse.
Time and time again in my life I have been taken advantage of and made to feel like a mannequin or doll to be played with rather than a human being. I know that abuse and neglect are sadly not uncommon occurrences in this world, but I feel like I've experienced far more than a lifetime worth of them. For those of you who know what an ACE score is, I clock in at a 9/10. When I go into details about my childhood and young adult life, it has always left therapists speechless and unable to offer any meaningful sentiment. My case is so complex, convoluted, and full of ideosyncracies, that no one has ever been able to help me. And they never will.
It constantly feels like I was dealt a heavy handed punishment since day one, being cursed with the inability to truly relate to anyone. Perhaps, I could cope better if there were one or two central problems in my life, but there is such a complicated entanglement of complaints that simply can't be separated. I have cPTSD that doesn't respond to any treatment, I have autism, I have chronic fatigue, I have a structural defect of the brain, I have tumors and cysts that keep popping up in my ovaries, I have spinal disease, I have no family, I could go on and on. But my point is, there are few people in the same boat as me. Sure, I could find someone who shares one of my issues, but the others would perplex them since those troubles are completely unfamiliar to them.
It is an extremely hollow and soul crushing position to be in, when all you can do is shout into the void. Nothing in mainstream psychiatry or psychology resonates with me in the slightest anymore. Over and over again, I've taken medications that did not work, I've been talked down to and spoken to like a petulant child who knows nothing, I've read books about PTSD that gave insight into why I am how I am but offered no solutions to mend that innate brokenness, I've spoke to therapists who offered harmful and damaging advice or shrugged their shoulders, and it has left me permanently suicidal because I know there's no real help out there for people like me.
The sort of PTSD I have is so niche and under-studied that I highly doubt there will be an effective resolution in my lifetime, for my particular case. Documentation of abuse caused by medic professionals is scant and borderline non existent. As early as 5/6 years old, I was getting UTIs, masturbating, making fucked up "playing doctor" scenarios with my toys, feeling violated constantly, and mortified of any medical environments. You can probably guess why. It has now been almost 20 years and my PTSD is even worse due to the compounding traumatic experiences.
Every bit of conventional wisdom has left me with nothing. Exposure makes it worse. Doctors mock my pain and many of them refuse to even acknowledge that I have PTSD or that they could trigger me even though I have been diagnosed for years, they call it a "little bit of anxiety". They took away the only sedative that helped me if I was forced to be in a medical environment, for absolutely no reason. Supposedly I am an irrational and mentally ill person for being unable to trust them and feeling violated by this profession, when all evidence points in the opposite direction. I have no reason to trust an institution which has ruined my entire life.
I've been told multiple times by healthcare staff things like, I need to be forced to accept penetration, that I need to want sex with partners and am letting trauma rule my life, I should be made to use dilators to make myself accept penetration so I can let them penetrate me against my will (for a test I said no to about 10 times), that I need to be forced to go to exposure therapy and get over it until I am desensitized, that I'm making up my physical health problems, my concerns are just anxiety, I don't need tests I just have boy problems, I am not trying hard enough to get better, everyone else can do this, etc.
Asserting any sort of boundary gets me treated as if I'm an insane malingerer. I've been suffering from chronic pain and poor health for years and these awful doctors and nurses kept gaslighting me and making me think I was lazy and not trying hard enough to improve my situation. Well guess what, my brain is deformed and protruding into my spine! I have horrible dysautonomia symptoms like Raynaud's, brainfog, non stop fatigue, neuropathy etc and everyone told me for years I am just depressed, lazy, and not trying to get my life in order. Nevermind the constant accusations that if I were really sick I would endure any and all pain and humiliation ad nauseum to search for answers, even if there isn't a true evidence based reason, because that's what real sick people do.
Additionally, I have scoliosis, degenerating discs, and inflammatory lesions of the spine likely caused by an autoimmune disease called AS, and the pain gets worse and worse as time drags on, yet they REFUSE to treat me or give me any sort of pain management because the NHS GP doesn't know about any of these rare conditions, typed them into google, shrugged, then told me to just exercise. I begged and pleaded with them, emphasizing I can barely do anything because of how bad I feel everyday, and they don't care. It makes me want to scream. When the pain is bad, it is excruciating, and activity is almost always guaranteed to cause me pain. Of course it would, I have a hole in my spine.
I feel like I'm living in a half-life. My chronic conditions are so bad I spend most of my time in bed, and the rest forced to push myself beyond my limitations. Ever since I had surgery a year ago to remove the tumors I had in my reproductive system, I have been even more of a shell of my former self. Throughout my melancholy, painful childhood, I was always told by therapists that once I turned 18, the world would be my oyster because I would be free to do whatever I wanted, with no more abuse and harassment from my family or my classmates. Yet, it's been the complete opposite. There are so many things I want to do, and CAN'T. It's a new type of existential horror to have the urge to create and yet your mind is this completely hollow and empty thing, unable to conure up anything creative or coherent and your vision permanently swirled, a permanent heaviness all over your body and struggle to stay awake.
When people actually do believe me about my sorry excuse of a life, they look at me with pity rather than empathy. Quite a few people I've been friends with in the past have told me that my life is a horror show and they can't fathom how I manage in the day to day. People just don't know what to say, and no one has answers for me. I would not want to kill myself if there was a way to fix my life, but there simply isn't. I've been down every rabbit hole that exists, including alternative treatments like psychedelics, supplements and herbal stuff, changing up diet, and it doesn't make one ounce of difference because I inherited these tricky, obscure fucking diseases, alongside being constantly neglected and abused until the point I became completely emotionally numb. I don't even know if I'm capable of loving another person romantically ever again.
All I wanted was to be normal, and if that wasn't in the realm of possibility, then maybe whatever evil deity or entropic force out there would be merciful and grant me normal problems, with normal solutions. Instead, I am this completely broken mess of a thing, no longer human yet forced to parade around as if I am. This will be the reason why I ultimately end things in the coming months. Believe me, I did try to make something out of the circumstances I was given. I really did try.
but now all that's left is the bus. There's no way to count the number of times I begged for help, only to realise it doesn't exist for a person like me.
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