KuriGohan&Kamehameha
想死不能 - 想活不能
- Nov 23, 2020
- 1,803
I have really tried to survive, but I'm tired of fighting a societal zero sum game. This is a battle that you are set up to lose if you are unlucky enough to be chronically sick or disabled.
In spite of all of this, I have tried my very best. I have stayed in education despite the fact that I often miss lectures and teaching due to the reality that I tend to sleep 10-12 hours a day as a consequence of CFS.
No matter what, I can't fucking win. The brainfog and attention issues mean that any in person activity is futile. I won't remember anything that's said in a lecture, I cant focus, my vision is permanently fucked. Mix this with the sensory processing issues with autism and its a recipe for disaster.
I've tried to force myself to look at people's faces and make eye contact, as the therapists had instructed me to when they attempted to train me like a dog, but all of the different stimuli send my brain into overload and some other executive functioning (like talking, movement, etc) is either impaired or halted completely.
So I can't win, when everyone expects a constant stream of appropriate body language microtransactions. Not to mention the tone and inflection of my voice is off to the point where strangers have remarked that they can perceive my autism within a single conversation. It is impossible for me to mask completely, because there are too many esoteric traits to conceal. I can't hide the impairment.
A particular member of my family, who was required to testify at an autism assessment for me to get a diagnosis and assistance, refused to speak, claiming that, "Ain't no grandbaby of mine a retard." Thus, no intervention happened, and I had to wonder for years and years why people bullied, mocked, and harassed me.
When I finally did get an on paper diagnosis as an older teenager, the aforementioned family member and her husband were in full blown denial and told me to stop "acting like a retard". Not only did I have to take insults from teachers- who were not trained on how to spot developmental disabilities in children, and would accuse me of poor character and laziness for struggling socially and academically- but my own family was ashamed of me.
Every chipper person I meet irl, or on other websites, told me that as you get older, it gets better and better, but I have only suffered more and more discrimination for being ill and disabled. Life has only gotten harder. I learned my lesson that I have to try and force extroversion to be tolerated by people, and it was confirmed by one of my housemates that my stints of quietness were only acceptable because sometimes I can be loud, funny, and open.
I don't choose to be this way. If it was up to me, I would love to be healthy, social, and full of energy. What has made me the happiest in life is spending time with people in contexts where I was accepted, partying, and getting immersed on the distraction. There are a dearth of these opportunities when you start to lag behind in the life script path.
I want to be able to go out, but my physical illness impedes me. Even if I have the energy to walk places, I may not have the energy to talk and socialise, and it is a constant vicious cycle of struggling with no sign of improvement. I'm being forced to accept a subpar experience that has 0 chance of taking a positive turn.
It's hard to articulate what I mean exactly, but my body often seems to go into a state of tired but wired, where I have a lot of motivation to do something and a strong desire to engage, but my nervous system is completely shot and overwhelmed, despite my body being flooded with stimulants that should compel it to work better. I have to drink diluted coffee to stay awake and lately it has been making me feel like I've been hit by a truck.
I can't deal with the physical pain and the constant emotional battering fostered by my inadequacy either. Around a year ago, I started having more and more issues with my back, where it never felt comfortable. A acouple months ago, I sat down and was paralysed for several minutes by the most excruciating nerve pain I've ever experienced. I now have permanent sciatica running all the way down my leg to my toe and it never gives me peace, I can never distract myself from that pain on top of the ailments I already had- like my legs being 'fizzy' and achy 24/7, muscular pain in my back, headaches, IBS, chronic constipation, the ME/CFS, it's just too much to bear.
In spite of this, I'm expected to function. In a few months I will have to attempt full time work and I am scared shitless , because I already fail to fulfill my university obligations, which are a lot less stressful because work can typically be done on your own time. It is nearly impossible for me to follow a schedule due to the cyclical, waxing and waning nature of the conditions I have. They are unpredictable, and society does not look too kindly on uncontrollable circumstances.
To add insult to injury, I cannot find a place to liive within the budget that's been allocated by my employer. So not only do I have to worry about losing my job for being ill and unable to perform the duties, but now I face constant discrimination in the housing market, because every shared rental property has specific requirements for the type of flatmate they want to let to.
After seeing dozens of properties where they say they want flatmates who will be sociable, join them at the gym, for drinks, etc and don't want someone who is going to retreat into their room, with interviews required for potential tenants, I'm ready to give up. Being disabled in this world is like a death sentence. You will constantly be beaten down and frowned upon for not being an energetic social butterfly with endless resilience, and I'm fucking tired of it.
People only embrace and accept disabilities that are easy to see and accommodate for. It does not take too much effort, for example, to change text colors to accommodate for a colorblind person. It takes significant effort to work around unpredictable health conditions which can vary in duration and severity.
I'm ready to go as soon as the opportunity arises, which unfortunately it won't for awhile.
In spite of all of this, I have tried my very best. I have stayed in education despite the fact that I often miss lectures and teaching due to the reality that I tend to sleep 10-12 hours a day as a consequence of CFS.
No matter what, I can't fucking win. The brainfog and attention issues mean that any in person activity is futile. I won't remember anything that's said in a lecture, I cant focus, my vision is permanently fucked. Mix this with the sensory processing issues with autism and its a recipe for disaster.
I've tried to force myself to look at people's faces and make eye contact, as the therapists had instructed me to when they attempted to train me like a dog, but all of the different stimuli send my brain into overload and some other executive functioning (like talking, movement, etc) is either impaired or halted completely.
So I can't win, when everyone expects a constant stream of appropriate body language microtransactions. Not to mention the tone and inflection of my voice is off to the point where strangers have remarked that they can perceive my autism within a single conversation. It is impossible for me to mask completely, because there are too many esoteric traits to conceal. I can't hide the impairment.
A particular member of my family, who was required to testify at an autism assessment for me to get a diagnosis and assistance, refused to speak, claiming that, "Ain't no grandbaby of mine a retard." Thus, no intervention happened, and I had to wonder for years and years why people bullied, mocked, and harassed me.
When I finally did get an on paper diagnosis as an older teenager, the aforementioned family member and her husband were in full blown denial and told me to stop "acting like a retard". Not only did I have to take insults from teachers- who were not trained on how to spot developmental disabilities in children, and would accuse me of poor character and laziness for struggling socially and academically- but my own family was ashamed of me.
Every chipper person I meet irl, or on other websites, told me that as you get older, it gets better and better, but I have only suffered more and more discrimination for being ill and disabled. Life has only gotten harder. I learned my lesson that I have to try and force extroversion to be tolerated by people, and it was confirmed by one of my housemates that my stints of quietness were only acceptable because sometimes I can be loud, funny, and open.
I don't choose to be this way. If it was up to me, I would love to be healthy, social, and full of energy. What has made me the happiest in life is spending time with people in contexts where I was accepted, partying, and getting immersed on the distraction. There are a dearth of these opportunities when you start to lag behind in the life script path.
I want to be able to go out, but my physical illness impedes me. Even if I have the energy to walk places, I may not have the energy to talk and socialise, and it is a constant vicious cycle of struggling with no sign of improvement. I'm being forced to accept a subpar experience that has 0 chance of taking a positive turn.
It's hard to articulate what I mean exactly, but my body often seems to go into a state of tired but wired, where I have a lot of motivation to do something and a strong desire to engage, but my nervous system is completely shot and overwhelmed, despite my body being flooded with stimulants that should compel it to work better. I have to drink diluted coffee to stay awake and lately it has been making me feel like I've been hit by a truck.
I can't deal with the physical pain and the constant emotional battering fostered by my inadequacy either. Around a year ago, I started having more and more issues with my back, where it never felt comfortable. A acouple months ago, I sat down and was paralysed for several minutes by the most excruciating nerve pain I've ever experienced. I now have permanent sciatica running all the way down my leg to my toe and it never gives me peace, I can never distract myself from that pain on top of the ailments I already had- like my legs being 'fizzy' and achy 24/7, muscular pain in my back, headaches, IBS, chronic constipation, the ME/CFS, it's just too much to bear.
In spite of this, I'm expected to function. In a few months I will have to attempt full time work and I am scared shitless , because I already fail to fulfill my university obligations, which are a lot less stressful because work can typically be done on your own time. It is nearly impossible for me to follow a schedule due to the cyclical, waxing and waning nature of the conditions I have. They are unpredictable, and society does not look too kindly on uncontrollable circumstances.
To add insult to injury, I cannot find a place to liive within the budget that's been allocated by my employer. So not only do I have to worry about losing my job for being ill and unable to perform the duties, but now I face constant discrimination in the housing market, because every shared rental property has specific requirements for the type of flatmate they want to let to.
After seeing dozens of properties where they say they want flatmates who will be sociable, join them at the gym, for drinks, etc and don't want someone who is going to retreat into their room, with interviews required for potential tenants, I'm ready to give up. Being disabled in this world is like a death sentence. You will constantly be beaten down and frowned upon for not being an energetic social butterfly with endless resilience, and I'm fucking tired of it.
People only embrace and accept disabilities that are easy to see and accommodate for. It does not take too much effort, for example, to change text colors to accommodate for a colorblind person. It takes significant effort to work around unpredictable health conditions which can vary in duration and severity.
I'm ready to go as soon as the opportunity arises, which unfortunately it won't for awhile.
Last edited:
i just want some rest and to feel okay for once.
