KuriGohan&Kamehameha
想死不能 - 想活不能
- Nov 23, 2020
- 1,682
I have been venting a lot lately, sorry. Things just keep getting worse, and no one understands my suffering besides a select few of my friends online, and you wonderful, supportive lot!
I am tired of hearing people pontificate that having a disability isn't so bad, and that you can still live a fulfilled and happy life while being extremely disabled. Sure, if you have amassed tons of wealth, resources, and a collection of loving, caring people who want to help you. The odds of that happening while being disabled are about as likely as a meteor crashing through my house right now.
Yesterday I was reading a disability support forum, and I saw other disabled people shitting on a man who was literally MISSING A LIMB, all because he made his girlfriend cook his meals and help him in the bath. They called him lazy, selfish, and abusive for wanting his gf to have a caretaker role. Keep in mind, these were other disabled people speaking and virtue signalling about how they are better because they try to force themselves to be independent even when it's near impossible.
Why didn't she just hire a caretaker for her partner? Or better yet, break up with him so that he can be with someone who actually cares about his needs and won't judge him for being disabled. People are so selfish. Deep down, I know it's selfish for me, as a disabled person, to need help or assistance with things, but it doesn't change the fact that I need it. Others will frequently remind you that no one owes you anything, which I do understand.
Yet, even basic requests like asking to sit down during a walk, asking my partner to walk with me and hold my hand because I can't keep pace, needing help with chores, not being able to attend uni classes sometimes because I'm too ill, etc is seen as unreasonable entitlement. It's like people would rather see someone suffer lest they be inconvenienced for 5 minutes.
I don't comprehend the motivations behind these attitudes. Do I hate washing dishes? Yes. Would I wash dishes if someone else in the house was sick or injured and unable to do so? Of course. Are people that self-centered that any mild imposition compels them to label someone as a lazy narc? I assure you, that the vast majority of disabled people would fulfill societal responsibilities if we were able bodied. We would not ask for assistance if we didn't truly need it.
Individuals will label you as a malingerer too if your illness is not well understood by the medical community. The medical profession doesn't know shit about dealing with most chronic illnesses or disabled people, yet everyone treats them like the utmost authority, when they frequently gaslight, neglect, and sometimes outright insult and abuse people with disabilities.
Doctors are allowed to refuse you treatments, manipulate and lie to you, insult you, and write slander in your records that will have lasting consequences- I. E. Drug-seeking, when all you want is some goddamn relief and you're tired of them tossing useless paracetamol your way.
CFS/ME is one of the most misunderstood diseases out there. So are most unexplainable chronic pain conditions like fibromyalgia, complex regional pain syndrome, irritable bowel, etc. Medical professionals in their smug charlatanism can only smile and brush you off, refusing to admit that they don't know how to help you, then when you tell others that doctors weren't able to cure the ailment they blame you and accuse you of not trying enough treatments. Bunch of utter wank, that is!
Having multiple physical illnesses in addition to complex, almost life-long PTSD, on top of a developmental disability (Autism) sounds like a new Faustian method of torture. However, this is simply how I am forced to live everyday. I look in the mirror daily and have to stomach the fact that I am an utterly broken person who is nothing but a burden on the world. Everyone tells me I just need to try more therapy, more pills, but after 10 years of therapy and more variants of medications than years spent on this earth, can't they see that technology and science haven't progressed far enough to help people like me?
I know my reality isn't some cognitive distortion like those CBT practioners love to claim. I know I'm not suffering from mere low self esteem that can be assuaged by some positive affirmations. I wish people would face the music and open their eyes to the fact that if someone is neglected for the majority of their life, suffers from multiple diseases, withstood sexual, physical, and mental abuse, and has to struggle daily with a developmental disability that impairs their functioning and oral communication skills, they will struggle. It isn't about not loving myself enough, it's that the world does not love people like me. We are regarded as utter trash by even the most advanced, progressive western societies.
Here is the reality: in the country I was born in, I am ineligible for disability benefits. Because I got ill as a teenager, I had not worked long enough to qualify for benefits. I spoke with disability agencies for many months, and they essentially said that I must move to a big city, live alone, become educated, and get a job. I tried that and failed miserably, could not fulfill my obligations at any of my jobs, and had to drop out of my first degree because I was just too sick and too far behind to complete it.
Now I am trying university again and I can barely go on. My cognitive abilities are just decimated. I used to love reading, loved strategy games, puzzles, learning, and now I struggle to remember anything or process complex information. My vision is permanently blurred like that hallway in my banner picture, lmao. Because I am reliant on my partner, I have no choice but to go to university, he won't let me drop out, as he says I'm capable of doing things "sometimes".
I have about 2.5 years left of my degree and I am already at my wits end with overwhelm and distress. The amount of money I have to spend on a worthless degree makes me want to cry. I will never have a career. I've applied to the limited selection of part time jobs that I would be able to do, and I never get hired because hundreds of people apply for them and you need connections to get anywhere. Also, no one wants to hire a disabled person who can only work extremely part time.
I tried so hard to train myself to function, kicked all my vices like soda and most junk food, tried my damnest to eat healthier and form what are considered better habits, to no avail. For over three months I tried to build endurance by leaning to cycle, and I could not do it. Even 10 minutes put me into a crash. This experience confirmed that I really have CFS, because of the trademark post exercise malaise. It is difficult for me to walk more than a kilometer a day because I am just really that disabled. I look skinny and sickly like a damned ghost.
Even with all these failures, people still think I can function as if I'm not disabled, but I can't. No one wants to be around me because I'm no fun and don't really have any hobbies anymore. The world would be better off without me but I am not allowed to end my suffering, because I am young and everyone thinks that with time I can magically get better. I'm 21 years old for God's sake, there isn't some miracle cure on the horizon simply because I haven't existed long enough.
Every one would be better off if I died. That is not an opinion, it is objectively fact. My boyfriend told me that I ruined his future, his dreams of being wealthy and having lots of kids. He still wants to adopt kids in the future or do surrogacy, even though he'd be working and I'd be the one caring for them. People really don't give a damn about me, huh? I did want to live, but after suffering for years with these disabilities, I don't want to anymore.
I do not think life is beautiful. As long as people are suffering, this is a world fueled by survival instinct, not felicitious, ethereal beauty.
I am tired of hearing people pontificate that having a disability isn't so bad, and that you can still live a fulfilled and happy life while being extremely disabled. Sure, if you have amassed tons of wealth, resources, and a collection of loving, caring people who want to help you. The odds of that happening while being disabled are about as likely as a meteor crashing through my house right now.
Yesterday I was reading a disability support forum, and I saw other disabled people shitting on a man who was literally MISSING A LIMB, all because he made his girlfriend cook his meals and help him in the bath. They called him lazy, selfish, and abusive for wanting his gf to have a caretaker role. Keep in mind, these were other disabled people speaking and virtue signalling about how they are better because they try to force themselves to be independent even when it's near impossible.
Why didn't she just hire a caretaker for her partner? Or better yet, break up with him so that he can be with someone who actually cares about his needs and won't judge him for being disabled. People are so selfish. Deep down, I know it's selfish for me, as a disabled person, to need help or assistance with things, but it doesn't change the fact that I need it. Others will frequently remind you that no one owes you anything, which I do understand.
Yet, even basic requests like asking to sit down during a walk, asking my partner to walk with me and hold my hand because I can't keep pace, needing help with chores, not being able to attend uni classes sometimes because I'm too ill, etc is seen as unreasonable entitlement. It's like people would rather see someone suffer lest they be inconvenienced for 5 minutes.
I don't comprehend the motivations behind these attitudes. Do I hate washing dishes? Yes. Would I wash dishes if someone else in the house was sick or injured and unable to do so? Of course. Are people that self-centered that any mild imposition compels them to label someone as a lazy narc? I assure you, that the vast majority of disabled people would fulfill societal responsibilities if we were able bodied. We would not ask for assistance if we didn't truly need it.
Individuals will label you as a malingerer too if your illness is not well understood by the medical community. The medical profession doesn't know shit about dealing with most chronic illnesses or disabled people, yet everyone treats them like the utmost authority, when they frequently gaslight, neglect, and sometimes outright insult and abuse people with disabilities.
Doctors are allowed to refuse you treatments, manipulate and lie to you, insult you, and write slander in your records that will have lasting consequences- I. E. Drug-seeking, when all you want is some goddamn relief and you're tired of them tossing useless paracetamol your way.
CFS/ME is one of the most misunderstood diseases out there. So are most unexplainable chronic pain conditions like fibromyalgia, complex regional pain syndrome, irritable bowel, etc. Medical professionals in their smug charlatanism can only smile and brush you off, refusing to admit that they don't know how to help you, then when you tell others that doctors weren't able to cure the ailment they blame you and accuse you of not trying enough treatments. Bunch of utter wank, that is!
Having multiple physical illnesses in addition to complex, almost life-long PTSD, on top of a developmental disability (Autism) sounds like a new Faustian method of torture. However, this is simply how I am forced to live everyday. I look in the mirror daily and have to stomach the fact that I am an utterly broken person who is nothing but a burden on the world. Everyone tells me I just need to try more therapy, more pills, but after 10 years of therapy and more variants of medications than years spent on this earth, can't they see that technology and science haven't progressed far enough to help people like me?
I know my reality isn't some cognitive distortion like those CBT practioners love to claim. I know I'm not suffering from mere low self esteem that can be assuaged by some positive affirmations. I wish people would face the music and open their eyes to the fact that if someone is neglected for the majority of their life, suffers from multiple diseases, withstood sexual, physical, and mental abuse, and has to struggle daily with a developmental disability that impairs their functioning and oral communication skills, they will struggle. It isn't about not loving myself enough, it's that the world does not love people like me. We are regarded as utter trash by even the most advanced, progressive western societies.
Here is the reality: in the country I was born in, I am ineligible for disability benefits. Because I got ill as a teenager, I had not worked long enough to qualify for benefits. I spoke with disability agencies for many months, and they essentially said that I must move to a big city, live alone, become educated, and get a job. I tried that and failed miserably, could not fulfill my obligations at any of my jobs, and had to drop out of my first degree because I was just too sick and too far behind to complete it.
Now I am trying university again and I can barely go on. My cognitive abilities are just decimated. I used to love reading, loved strategy games, puzzles, learning, and now I struggle to remember anything or process complex information. My vision is permanently blurred like that hallway in my banner picture, lmao. Because I am reliant on my partner, I have no choice but to go to university, he won't let me drop out, as he says I'm capable of doing things "sometimes".
I have about 2.5 years left of my degree and I am already at my wits end with overwhelm and distress. The amount of money I have to spend on a worthless degree makes me want to cry. I will never have a career. I've applied to the limited selection of part time jobs that I would be able to do, and I never get hired because hundreds of people apply for them and you need connections to get anywhere. Also, no one wants to hire a disabled person who can only work extremely part time.
I tried so hard to train myself to function, kicked all my vices like soda and most junk food, tried my damnest to eat healthier and form what are considered better habits, to no avail. For over three months I tried to build endurance by leaning to cycle, and I could not do it. Even 10 minutes put me into a crash. This experience confirmed that I really have CFS, because of the trademark post exercise malaise. It is difficult for me to walk more than a kilometer a day because I am just really that disabled. I look skinny and sickly like a damned ghost.
Even with all these failures, people still think I can function as if I'm not disabled, but I can't. No one wants to be around me because I'm no fun and don't really have any hobbies anymore. The world would be better off without me but I am not allowed to end my suffering, because I am young and everyone thinks that with time I can magically get better. I'm 21 years old for God's sake, there isn't some miracle cure on the horizon simply because I haven't existed long enough.
Every one would be better off if I died. That is not an opinion, it is objectively fact. My boyfriend told me that I ruined his future, his dreams of being wealthy and having lots of kids. He still wants to adopt kids in the future or do surrogacy, even though he'd be working and I'd be the one caring for them. People really don't give a damn about me, huh? I did want to live, but after suffering for years with these disabilities, I don't want to anymore.
I do not think life is beautiful. As long as people are suffering, this is a world fueled by survival instinct, not felicitious, ethereal beauty.
