Venting I Can't Function (chronic pain hyperacusis)

[GyreOfAsh]

Invisible suffering is treated as an inconvenience & viewed as shameful weakness. If wounds do not bleed where others can see them, they do not exist. And if your pain does not resemble theirs, they will shame you for it. Our peace is limited by their mental capacity or incentive to extrapolate beyond themselves. Our pain asks too much of the average human mind. If you do not meet the many especially unspoken standards, you will be corrected, shamed, pressured, etc. And even though motivation without foundation is delusion, their desires will still be forced onto you. They will attempt to mold you into something that functions more conveniently within their system. Even if it breaks yours.

I have a condition called "Hyperacusis" which is defined as an intolerance to everyday sounds. I can hear just as well as the average person, but my pain threshold is significantly lower. The average persons discomfort/pain from sound starts at ~85-90db while mine starts at ~45-50db. Sound is logarithmic so this is about a 10k-30,000-fold difference in magnitude.

Here's a small chart that describes different sounds & my perception of them vs the average person:


pain concept: a microwave beep to me is what a smoke alarm beep is to the average person, a smoke alarm beep to me is what a high-output industrial emergency alarm is to the average person, a high-output industrial emergency alarm to me is what a large military explosion is to the average person, etc.

It's not an exact 1:1 comparison but it's pretty close. The flaw is that it's like comparing the resilience of skin above a wound above a fracture (that both never fully heal) to the skin above the absence of a wound or fracture...

And though the immediate nociceptive pain response is bad, it still isn't even the worst of it. I can be pretty resilient to immediate & brief pain. But with this condition, it never stays brief. It spreads into prolonged internal chaos. My nervous system works in tandem with my brain to create even more debilitating pain & stress via neurosensory fatigue, autonomic hyperarousal, central auditory gain dysregulation, etc. This has the same negative impact that any extremely high stress state does on any body. Homeostasis capabilities are weakened. My nervous system struggles to regulate itself under conditions that others themselves routinely barely notice.

Many are able to establish their lives before they experience a significant amount of chronic pain. I've had debilitating chronic pain from hyperacusis & nervous system related issues ever since I was an early teenager. It's why I dropped out of high school at age 16. It's why I've preferred isolation for the last 10 years. It's why I've slowly drifted away from general socializing. It's why my view on life is dimming. Hyperacusis did not enter my identity, it formed it. Before I could choose to become someone, I became someone in pain.

If they even acknowledge it, many in life don't truly understand or respect this. They never will. Not when it's needed the most. Not even those closest to me.
And that's exactly why I'm here. This world wasn't built for people like me. I recognize that now more than ever. I'm defective. Destined to be constantly misunderstood. Destined to constantly suffer. I've been shown time & time again that I cannot truly rely on anyone to reduce my suffering & yet this condition is one that only becomes tolerable when there is someone to heavily rely on. Quiet environments reduce the pain and allow my nervous system to regulate. But isolation is not thriving. It is containment. There is no bright or worthwhile future in isolation. And yet, I cannot cope without it.


^warning flashing elements

 

[RiftbornVeil]

Invisible suffering is treated as an inconvenience & viewed as shameful weakness. If wounds do not bleed where others can see them, they do not exist. And if your pain does not resemble theirs, they will shame you for it. Our peace is limited by their mental capacity or incentive to extrapolate beyond themselves. Our pain asks too much of the average human mind. If you do not meet the many especially unspoken standards, you will be corrected, shamed, pressured, etc. And even though motivation without foundation is delusion, their desires will still be forced onto you. They will attempt to mold you into something that functions more conveniently within their system. Even if it breaks yours.

I have a condition called "Hyperacusis" which is defined as an intolerance to everyday sounds. I can hear just as well as the average person, but my pain threshold is significantly lower. The average persons discomfort/pain from sound starts at ~85-90db while mine starts at ~45-50db. Sound is logarithmic so this is about a 10k-30,000-fold difference in magnitude.

Here's a small chart that describes different sounds & my perception of them vs the average person:

View attachment 195253
pain concept: a microwave beep to me is what a smoke alarm beep is to the average person, a smoke alarm beep to me is what a high-output industrial emergency alarm is to the average person, a high-output industrial emergency alarm to me is what a large military explosion is to the average person, etc.

It's not an exact 1:1 comparison but it's pretty close. The flaw is that it's like comparing the resilience of skin above a wound above a fracture (that both never fully heal) to the skin above the absence of a wound or fracture...

And though the immediate nociceptive pain response is bad, it still isn't even the worst of it. I can be pretty resilient to immediate & brief pain. But with this condition, it never stays brief. It spreads into prolonged internal chaos. My nervous system works in tandem with my brain to create even more debilitating pain & stress via neurosensory fatigue, autonomic hyperarousal, central auditory gain dysregulation, etc. This has the same negative impact that any extremely high stress state does on any body. Homeostasis capabilities are weakened. My nervous system struggles to regulate itself under conditions that others themselves routinely barely notice.

Many are able to establish their lives before they experience a significant amount of chronic pain. I've had debilitating chronic pain from hyperacusis & nervous system related issues ever since I was an early teenager. It's why I dropped out of high school at age 16. It's why I've preferred isolation for the last 10 years. It's why I've slowly drifted away from general socializing. It's why my view on life is dimming. Hyperacusis did not enter my identity, it formed it. Before I could choose to become someone, I became someone in pain.

If they even acknowledge it, many in life don't truly understand or respect this. They never will. Not when it's needed the most. Not even those closest to me.
And that's exactly why I'm here. This world wasn't built for people like me. I recognize that now more than ever. I'm defective. Destined to be constantly misunderstood. Destined to constantly suffer. I've been shown time & time again that I cannot truly rely on anyone to reduce my suffering & yet this condition is one that only becomes tolerable when there is someone to heavily rely on. Quiet environments reduce the pain and allow my nervous system to regulate. But isolation is not thriving. It is containment. There is no bright or worthwhile future in isolation. And yet, I cannot cope without it.

I am so sorry you're struggling by this condition. We don't get to choose the cards we're dealt, and that is such an agonizing truth. It is unfortunate CPH has taken your chance at a higher education and socialization. Humans are social creatures, after all, and your view on isolation as containment is one I understand completely.

The world is ignorant, restrictive, and propels those who check certain boxes forward. It is unkind, cruel, and hostile at times.

Please, hold your head high. And if you ever need to vent, SaSu, including myself, is here

 

[GyreOfAsh]

I am so sorry you're struggling by this condition. We don't get to choose the cards we're dealt, and that is such an agonizing truth. It is unfortunate CPH has taken your chance at a higher education and socialization. Humans are social creatures, after all, and your view on isolation as containment is one I understand completely.

The world is ignorant, restrictive, and propels those who check certain boxes forward. It is unkind, cruel, and hostile at times.

Please, hold your head high. And if you ever need to vent, SaSu, including myself, is here

Thank you so much I really appreciate your kind words. It feels really good to be understood fr. So used to being denigrated irl. I'll definitely try my hardest to keep a good frame of mind. One perk of suffering significantly from a young age is that the further you get in life typically translates to some pretty significant resilience. The toughest part can determining if the mind is about to break or is just due for repair hah. For now I'll assume repair. Thanks again.

 

[RiftbornVeil]

Thank you so much I really appreciate your kind words. It feels really good to be understood fr. So used to being denigrated irl. I'll definitely try my hardest to keep a good frame of mind. One perk of suffering significantly from a young age is that the further you get in life typically translates to some pretty significant resilience. The toughest part can determining if the mind is about to break or is just due for repair hah. For now I'll assume repair. Thanks again.

Ah, fair enough, I never thought about resilience that way.

And I am glad you've assumed repair for the time being

Everyone I've met and interacted with here is so kind and understanding; we're all struggling in some way or another, and to me it's disgusting to berate someone for an aspect of their life that is out of control.

Sending you my best wishes.

 

[GyreOfAsh]

Ah, fair enough, I never thought about resilience that way.

And I am glad you've assumed repair for the time being

Everyone I've met and interacted with here is so kind and understanding; we're all struggling in some way or another, and to me it's disgusting to berate someone for an aspect of their life that is out of control.

Sending you my best wishes.

Yeah everyone here is really kind & understanding. And yeah the berating was really hard for me to understand in the past since I've always been a peaceful & understanding person. It's why betreyal hits me so hard. I just can't imagine being in certain ways & I forget the brutal lengths that people are willing to go.

And for the resilience part, it's such an odd thing too that most of us feel far before we usually accurately conceptualize it due to how steady we're accommodating to the higher demands. I might be simplifying it too much but I like to view it like we feel overwhelmed because we're running on old hardware (evolution) & also varyingly damaged hardware & shotty software (harsh life experiences, physical states, etc). So there's a heavy reliance on the software & environmental elements (mind, consciousness, living situation, etc) to create that resilience buffer zone. And right now I'm being tested by life & so many on this site are also being tested in ways that are making that already small buffer zone even smaller but not necessary completely gone. Again oversimplification but I like this view hah.

Right now I feel like an old pc that can't handle the heat & needs a cool isolated room to thrive in. I feel fine at the exact moment because I'm in the cool room but there's a volitile potential just waiting to expand when exposed to the heat again & aggravate the entire system. The longer the exposure, the sooner the crash & potential brick. I'm here to plan for a more peaceful final crash. But for the time being, I'm staying in the cool room lolol. Not ready to fully crash out just yet.

Thanks again

 

[dontwakemeup]

Chronic pain sufferer here, so I definitely understand how you feel. I may not understand your level of pain, but I understand how chronic pain suffers are frowned upon, misunderstood, labeled as drug seekers, ignored, and basically treated like crap by society, including medical professionals!

I never truly understood chronic pain until I began to suffer from it. Yes, I learned the basics in school but it's just something no book can teach you. I think people who have any chronic pain related illness should have the right to euthanasia!

I looked up those euthanasia sites and it seems impossible to even get euthanized.

I hate when you tell people you're in pain today, like you stated, they can't imagine. If you say, "I have a headache," they will treat you nice and better. If you complain about the same type of pain, it's like people get desensitized!

I'm sorry you have to suffer. Are there any things you enjoy doing?

 

[RiftbornVeil]

Yeah everyone here is really kind & understanding. And yeah the berating was really hard for me to understand in the past since I've always been a peaceful & understanding person. It's why betreyal hits me so hard. I just can't imagine being in certain ways & I forget the brutal lengths that people are willing to go.

And for the resilience part, it's such an odd thing too that most of us feel far before we usually accurately conceptualize it due to how steady we're accommodating to the higher demands. I might be simplifying it too much but I like to view it like we feel overwhelmed because we're running on old hardware (evolution) & also varyingly damaged hardware & shotty software (harsh life experiences, physical states, etc). So there's a heavy reliance on the software & environmental elements (mind, consciousness, living situation, etc) to create that resilience buffer zone. And right now I'm being tested by life & so many on this site are also being tested in ways that are making that already small buffer zone even smaller but not necessary completely gone. Again oversimplification but I like this view hah.

Right now I feel like an old pc that can't handle the heat & needs a cool isolated room to thrive in. I feel fine at the exact moment because I'm in the cool room but there's a volitile potential just waiting to expand when exposed to the heat again & aggravate the entire system. The longer the exposure, the sooner the crash & potential brick. I'm here to plan for a more peaceful final crash. But for the time being, I'm staying in the cool room lolol. Not ready to fully crash out just yet.

Thanks again

That's such an on-point metaphor.

And a great explanation!

 

[GyreOfAsh]

Chronic pain sufferer here, so I definitely understand how you feel. I may not understand your level of pain, but I understand how chronic pain suffers are frowned upon, misunderstood, labeled as drug seekers, ignored, and basically treated like crap by society, including medical professionals!

I never truly understood chronic pain until I began to suffer from it. Yes, I learned the basics in school but it's just something no book can teach you. I think people who have any chronic pain related illness should have the right to euthanasia!

I looked up those euthanasia sites and it seems impossible to even get euthanized.

I hate when you tell people you're in pain today, like you stated, they can't imagine. If you say, "I have a headache," they will treat you nice and better. If you complain about the same type of pain, it's like people get desensitized!

I'm sorry you have to suffer. Are there any things you enjoy doing?

Exactly! I recently spoke with an older gentleman about the experiences with this exact type of chronic pain & he said he's been to many different kinds of doctors & that it's pretty much rare to come across someone in the medical field that understands this condition well enough to not misdiagnose or gaslight someone based on their limited prior knowledge & awareness on the issue. As a consequence, it's mostly forever treated as a minor issue. Getting anyone to accurately assess or consider the full extent of the pathological & debilitating nature of this condition is seemingly impossible. You'd think that someone like me who can decently explain the exact mechanisms for the cause (damage to inner hair cell &/or nerve cells which generates to many synaptic vesicles, action potentials, etc) would be great help for people to understand my condition more deeply. Nope. I'm just treated similarly to how an overly dramatic child or conspiracy theorist might be treated.

Euthanasia really should be legal for people like me. It was so devastating when I realized that my life's downward spiral is in perfect sync with this condition. I've unavoidably mourned myself at the most major turning points & the recent one is what led me to this site. This recent mourning was because of that exact betreyal type you mentioned. Many even loved ones have plenty of socially acceptable surface level sympathy to show when it benefits them to but not enough true embodied empathy to anchor what actually matters. Especially not when it inconveniences them.

Oh yeah but the things I enjoy doing now have become very safe, quiet, low energy, low stress. Feels like I'm just passing the time with filler. I can't get deeply attached to many things because I can only go so far with them. For instance, I'm a pianist & it used to be a fun instrument to play for me. But now because of my hyperacusis & nervous system issues, playing can trigger the immediate nociceptive pain & other. Just recently I played a pretty fast piece only to have it constantly bloat my face from the cortisol. Everytime I would focus on playing, I felt the adrenal demand via pressure sensation in skull & my face would expand. It only deflates when I stop the stressor so I did just that. I stopped playing the piano, it deflated & the adrenal pressure sensation went away. This is something that I've always felt. The higher adrenal output. It's why I drifted away from socializing. Even when I couldn't quite pinpoint what I was going through, I knew it was real. Even through all of the shaming & misinterpretations. Many thought I was antisocial but nope. Just severely limited by factors the eyes can't see..

That's such an on-point metaphor.

And a great explanation!

Thanks I've tried in the past to use similarities like this to help explain my condition & difficulty to others but it never seemed to work well so I never fully tried to expound on any concept alike. Still useful for a more personal & internal aid though. Especially for secular minds.

 

[dontwakemeup]

You said it perfectly, one has to "grieve and say goodbye" to the former person they were before! We clearly know our conditions and can even formulate it and break it down to the simplest level anyone can explain, but does that truly work in our favor I would think yes, but I have come to conclude in my experiences, it makes one look like a drug seeker, a Google researcher, and medical professionals don't seem to be pleased we know the names of our conditions and how to treat them, if there are any treatment options at all.

I go to a pain clinic and I always rate my pain high and tell my Dr this medication isn't working. Every visit is always the same ending, same medication, and new recommendations such as try Yoga last time I am literally crying at my appointments and telling him how poor my quality of life is, but nothing changes. One day recently I couldn't take the pain anymore, so I went to the ER. I only wanted relief for that day! I never asked for pain medication to go home with, just please let me be in peace for today and tomorrow I can pick it back up I thought. The Dr walked in and said, "64 pills huh?" (The fake #of pills I get a month). I couldn't believe that was my introduction as a patient in the ER. No hru today? Tell me what happened. I would have went off on him but the pain wouldn't let me. He sent me home with 10 higher dose of pills that I currently didn't take. It helped, so I was satisfied. I wish I could've stayed overnight for pain management. So this is my point, theu see us all the same. That is the day I came home and started looking up Dignitas and another place for euthanasia. It's like chewing glass with those places, it will take forever. It's sad that one has to feel that this is their only option, and it's not even a reality we can obtain!

Playing the piano is tough, that's amazing you learned to play!! I'm sorry you can't get to enjoy something I would consider a small thing, but for you it's major. Whatever that bothers you whether it's small to me it doesn't matter because that thing is now a mountain and people have to try to understand the value in it as you would. I think that's what people can't grasp. I miss running. Some would say, just walk. Least you have legs. But you can't tell me or minimize running to me or feel grateful I have legs.

I just pray this site will be useful in so many ways. It's not just for suicide but it also give people who are not members Hopefully answers and closure to the "whys." So many people always say, "There were no signs!" I call that BS. Long as we are living a life of solitude and breathing they are ok with that. The moment we say we just want to go then we are crazy, forced institutionalized, put on medication, etc. But, we told everyone or tried in the beginning to explain our diagnosis to everyone and nobody cared to look through life using our glasses, so we go quiet. I pray that euthanasia will be easier accessible. The way they treat people with chronic pain will change. Maybe we can have an opportunity to have someone come to our house and do small chores for us or help us do the small things we can't do. Maybe offer us service pets, free meals, or weekly home visits. Things just need to change for all of us.

I'm sorry my post was so long, guess I needed to vent too.