Being understood by no one

[KuriGohan&Kamehameha]

I truly feel alone in this world, not just literally but in terms of having any sort of presence around that's relatable to me. Life for most people seems to be the polar opposite of mine, and with each passing week, month, year, I slip further and further away from any sense of normalcy or relatability.

Eventually, I think something just snapped within me, resulting in a sensation akin to dying inside and a subsequent zombie-like state that I've been wandering through aimlessly. My life has been extremely downhill since a year ago when I had abdominal surgery. It was already bad, but I think that event was the point of no return for me. Overnight, it was like every single problem I had suddenly turned up to the maximum.

I'm so tired and done with the bullshit. I can't "fight" anymore. Whenever I first got ill when I was a teenager, I kept swimming along and pushed myself. I spent years trying to fix my chronic fatigue and pain only to realise that it was not temporary and would be a burden I have to bear the rest of my life. I basically have to stay in bed if I don't want to experience back pain. My IQ dropped profoundly and I constantly get accused of acting stupid on purpose even if I'm trying my absolute best. I can tell my circulation is shot as I pretty much have heavy, cold and numb extremities all the time, and too many other problems to count.

My mind and body are completely shot by years of chronic illness, and the attitudes and lack of understanding excused by others do nothing but pour salt on festering wounds. Being an autistic woman is hard and isolating enough, but all the illness and trauma I've been through make me a defacto alien species on the wrong planet.

I know people mean well, but they really don't understand. Not in the slightest. Sometimes I wonder if it's best to completely isolate myself and live under a rock until I die, to avoid this. There is a friend who I've known over 4 years at this point, who knows my situation very well. She knows that I've been in the mental health system since early childhood and it has failed me completely, alongside all of my chronic physical health problems which I have received no tangible help for either.

Despite this, she refuses to believe that psychotherapy doesn't help me because she is extensively invested in pop psychology youtube content. She has told me multiple times that "trauma is trapped in my body" and I have not done enough "body based therapies" to release it. Almost everyone knows that having PTSD correlates with poor health outcomes, that has been well studied to the point of being a maxim now. However, how that occurs is still poorly understood, so I think that's why youtube influencers capitalize on this topic to promote certain types of psychotherapy and their personal books/training courses that endorse them.

I have tried all of these somatic based techniques and they don't do shit for me, because in my case the damage has already been done long ago. I have had high inflammation in my blood, tumors, spinal degeneration, and random autoimmune markers before. Doing these techniques might help her or others, but they are not helping me. Ostenibly, my immune system has gone haywire and attacked my body in some way. Despite this, she continues to push this line of thinking on me and invalidate me and my experiences with multiple types of therapy not helping my PTSD or physical health.

Another friend of mine who used to be fairly supportive flat out called my views and mindset "dumb and stupid" for being somewhat nihilistic in nature. I don't subscribe to nihilism for everyone or in general, but I view suffering as inherently pointless and possess a simmering disdain towards biology and life as a concept for making such capacity for suffering possible. I've spent years being ill and impaired and I think it's absurd and unnecessary that we have to be so sentient regarding pain. Also I did a degree where I was reading non stop about awful diseases and how genetics environment etc can go wrong and cause unforeseen consequences. I refuse to have kids for this reason as well, it's at the cornerstone of my beliefs that I would never want to subject anyone to what I've been through.

Well, my friend said I am dumb and stupid, there is always hope for a better tomorrow, life is inherently good and it's a good thing that I was born. Such statements are offensive to me simply because I've had this rhetoric pushed on me for YEARS, and it made sense when perhaps I had a reason to hope, but in the state I'm in now... I clearly don't. I've been on so many medications, supplements, had blood tests and scans ad nauseum, introduced new foods into the diet, forced myself into activity even when my body is screaming and lagging, and with every passing year I've gotten worse rather than better.

This friend also constantly feeds me sentiments that my whole issue is other people reinforcing that I'm hopeless rather than trying to motivate me, saying I surround myself with the wrong people, so I should talk to their friends instead who are terminally online younger people who believe garbage like "autism isn't a disability it's just your mindset". It's completely laughable when every day of my life I have been ostracized due to a neurodevelopmental disability which is now treated like a beneficial quirk to some people.

Other people's attitudes have paradoxically driven me further into the hole. People either pity me or think that I'm faking or exaggerating how bad off I am. Years ago, when I first started to experience chronic fatigue, I still had some level of concentration and could push myself for more hours a day. Now, if I'm able I will easily sleep 11+ hours a day, I struggle to walk or climb stairs, have neurological problems and my concentration and memory are completely shot. I also have a brain malformation (Chiari) which probably contributes to this and the feelings of dysautonomia.

My life is a shell of what it could be, through no fault of my own. I went from building more confidence right back to being quiet, as my head is more often than not completely empty, forgetting words, forgetting songs, forgetting memories, forgetting everything... Struggling to retain information. I graduated my bachelor's with high grades and am straight failing my master's course or barely passing modules, that's how bad it is. Even when I put in effort, the mistakes always add up and I think people believe I'm not trying because of how slow, sluggish and disoriented I always am.

No matter where I am, I get no understanding from people, save for the hushed whispers of how they don't know how I handle it and they would hate to be me. Since I have no family survival is a struggle, I am never going to feel secure or comfortable. No one I have ever known in my life has been able to relate to how it feels to have no family or people you can rely on. Knowing this information, my partner's family still snubbed me, and are basically an entirely seperate entity to me now ever since my partner's mother kicked me out when I didn't want to be sectioned. They celebrate all holidays together without me and do not speak to me or invite me to anything. I might as well not exist.

My relationship is also terrible but that's a seperate can of worms entirely. For years my partner has browbeaten me because my condition does not improve, or chooses to constantly downplay how bad it is. When I would manage to pull through anything, it was proof that it "wasn't so bad." Then in turn, when I struggle, it's proof that I "am not committed to trying to improve my health and just want to complain." I'm at the point where no one else knows what to do and it's clear that there's no chance of things improving, but no matter what, it's still my fault somehow.

I can't really function and housebound/bed bound life is and always was my worst nightmare. I am so fucking sick of doomscrolling websites, youtube shorts, tiktok, and whatever to pass the time. It's complete brainrot. Can't handle multiplayer games because I'm so bad at them and the other teammates insult and swear at me for being bad at games. Mentally, I need to be busy and stimulated but my health does not really allow this as I'm permanently out of it.

I'm so sick of this half life and how no one understands. It is so isolating and lonely. I really wish there was euthanasia where I am, so that I don't have to die with no dignity and in pain in a random hotel room by myself, and perpetually in fear I'm going to fail and be sectioned. It would be my worst nightmare. I don't know why others are incapable of understanding that after 7 years of illness which has gotten worse, I'm not going to get better, and yet I'm expected to suffer every single day of my life until I die of natural causes.

The physical and emotional pain of being worn down and having the candle burnt at both ends for years is so raw and visceral, no one seems to understand it.

 

[dolemitedrums]

I feel for you. I hope things get better and you have my support in doing whatever you think is right if they don't.

 

[FuneralCry]

It really sounds like you've suffered so unbearably, it truly is so incredibly horrible to me how people are denied the option to be euthanised and are instead expected to suffer until they die anyway in an existence so cruel with no limit as to how unbearable it can get. But anyway best wishes.

 

[LaVieEnRose]

I don't feel understood in general and can't relate to anyone either. It's a terrible pain. The sad thing is that even if a few people can give you a sense of being understood, if it isn't a systemic thing you experience throughout the whole of your life it just doesn't suffice.

 

[KuriGohan&Kamehameha]

I don't feel understood in general and can't relate to anyone either. It's a terrible pain. The sad thing is that even if a few people can give you a sense of being understood, if it isn't a systemic thing you experience throughout the whole of your life it just doesn't suffice.

You hit the nail right on the head as usual. I'm grateful that I can find like minded people here who have been through similar things, but you're right that it isn't quite the same. It's like having nothing but a small candle while being trapped in a pitch black forest- it helps you through the darkness a bit longer, but eventually the warmth wanes when you need a much stronger flame to survive.

I do wonder if life would've been different for you, me, and many others if our issues were properly acknowledged during pivotal phases of development and certain harmful interventions never happened. Would things be better now? It's just a fanatasy for me, but it's a nice one to imagine, even now when it's too late for me.

It's so lonely when society at large just doesn't have a care in the world. One day one of my housemates accidentally locked me out of the house and I basically almost passed out in a 24 hour library while freezing like mad. Other housemate was with their girlfriend and wouldn't even drive 12 minutes away to unlock the door. Everyone else I contacted ghosted me or just said it sucked to be me. No offer to even chill on their sofa or anything.

Whenever I was pretty much homeless in the past and had to sleep on a co-workers floor every single one of my "friends" didn't care at all. I've slowly just learned to expect that no one cares and my issues and problems are seen as nothing but an inconvenience and a burden.

Reaching out for "help" time and time again only to receive nothing from so called caring institutions has had a similar effect as sticking my hand in a scalding pot- get burnt so bad I never want to do it again. I know you've experienced a similar number of failures and mistreatment from psychiatry especially. It's beyond disheartening and erodes away any trust that's left.

There's only so many times I can hear, "That sucks, have you tried taking a walk?" and "Sorry, I can't help you. I don't know! You'll just have to cope" and my personal least favourite of all the robotic lines, "If you disclose any thoughts of harming yourself we need to break confidentiality!" From these so called experts.

 

[Seiba]

Navigating everything alone with the only temporary difference to being alone is being ignored or outright told what's occuring can't be genuine or is simply a lack of will is a terrible to experience.

I relate to the bit about walks or being told to seek help. It's a major reason why I'm inhibited about my suicidal thoughts I've had over the years. I ride a bike to work and often bring a rope in my backpack just in case I can ever rise out of my tendency to hardly feel like a real person and get the drive to leave.

I think something not understandable to a lot of people is that a lot of us barely get past the tutorial in regards to resources. We have no one who is going to meaningfully intervene or change anything in regards to how they interact with us but all of the resources say to give other people a chance.

They act like if you want to kill yourself everything in our lives is a white picket fence and we are being willingly obstinate. There is no catharsis for experiencing everything on end. Everything is temporary and when it's no longer temporary it's a matter that needs acceptance so it's temporary in their mind.

I suppose I'm saying similar to before but I'm sorry you have never been acknowledged or experienced relief. Your willingness to try to be honest with others time and time again only to be punished or dismissed is something very alienating.

I completely understand what you're saying about being acknowledged during pivotal periods in life. Unfortunately, problems only seem to seem to get worse if they're not preemptively solved if they're of a certain nature.

Sorry if the formatting is terrible, I made the post on a phone.