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FuCrpsPain

Member
Jan 22, 2022
22
Today my husband found out one of his friends is in hospital, in a coma, on a vent. I feel bad for his friend but mostly I'm jealous. I'm jealous because he is closer to death than I am and he wasn't even wanting to... When all the covid stuff started and the news was saying how deadly it was going to be, I was somewhat excited. I was hopeful that maybe I wouldn't have to plan my death, I could just get covid. I get hopeful when I see a car speeding, I think maybe they will lose control and take me out, or if there is a tornado warning, I hope I'll go for a spinning ride to the clouds. When my doctor had to run tests on my thyroid, my first thought was I'm going to die of cancer, and I was happy... It wasn't cancer. Instead, later in life, I end up with a chronic pain illness that has no cure. It depresses me that I can't be as lucky as those on the verge of death. Watching movies like Final destination wishing I was next on fates list. Anyone else jealous of those that die from accidents or illnesses?
 
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S

SuicidallyCurious

Enlightened
Dec 20, 2020
1,715
Definitely not jealous of someone on vent
Definitely am jealous of relative who died from accidental fentanyl OD
 
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WearyHSP

WearyHSP

Student
Dec 12, 2021
164
I had the same response when covid came out! Just hoping it might kill me.

I avoided a breast biopsy, not because I was afraid I might have cancer, but because the copay was $400. So instead I went back for an ultrasound last month. After I learned it wasn't cancer, I went to my car and wept.
I watched a friend fight for her life for years with lung cancer and I wished I could change places with her - she had loving family and an otherwise good life. I have nothing and would gladly switch places. She suffered for years despite having access to assisted suicide. I wish I had access to AS.
A long-distance friend of mine died suddenly three years ago. As sad as I was to hear it, my first response was jealousy.
@FuCrpsPain you're not the only one. I get it. I have a chronic illness too that's hugely underfunded and untreatable but also invisible so there's no support groups or kindness in the general culture. I'm completely alone.

Yes, very jealous. If only I could trade places with those who have good lives and want to live!
 
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whatevs

whatevs

Mining for copium in the weirdest places.
Jan 15, 2022
2,913
How is what I feel nonsense?
I think it was the coma and vent elements that triggered that response. Doesn't sound like a death to be envious of.
 
Chinaski

Chinaski

Arthur Scargill appreciator
Sep 1, 2018
3,469
How is what I feel nonsense?
Don't want to ventriloquise the person you're replying to here but will add that there's a few "I envy the terminally ill" type posts that occasionally emerge here and imo anyone going through the actual experience of terminal illness would probably find it offensive to see their plight discussed in such flippant terms, and people who have seen terminal illness up close probably will not share your view. This isn't to have a pop at you, just pointing out that there are ways these posts can be offensive.
 
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L

Looooser

My 2 cents
Feb 3, 2022
212
I feel the same way. I have had a few friends die by suicide or vehicle accidents and I always think why not me. I should have died so many times from suicide attempts or doing stupid stuff. I'm just cursed I guess.
 
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Y

YourNeighbor

Arcanist
Jul 22, 2021
423
How is what I feel nonsense?
You could only claim to wish you were dying of illness if you have no idea what you are talking about. Hundreds or thousands of comments on this site go back and forth on many ways to die, and debate pros and cons over methods that involve hours, minutes, even split seconds. And you suggest you'd like to die over months or years, most likely in a horrific manner? That is what dying of illness looks like for most in our time.
 
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Al Cappella

Al Cappella

Are we there yet?
Feb 2, 2022
888
I totally get what you're saying, I think. Because once you have that terminal diagnosis, it's over, it's got momentum on its own, the end is in sight. The responsibility is over. You don't have to carry it anymore. There is peace in that. And no one can say one sort of suffering is worse than another, from a personal experience standpoint.
 
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waitingforrest

Elementalist
Dec 27, 2021
842
You wouldn't write such nonsense if you knew what you were writing about.
I can understand where you are coming from, terminal illnesses are horrible to watch. Watching the one you love die slowly or lose parts of what they were is terrible. Especially if they really wanted to live and have aspirations.

But, there is perhaps a better way of saying that you disagree without disregarding op's stance. A simple, "terminal illnesses are a terrible and slow way to die" is less inflammatory but still gets the point across.

I think a better way to put it would be a wish to trade places with people that want to live. I see so many young kids with cancer and I wished that there was a way to give my life to them because I am wasting mine. At least in some way I can do a bit of good for once.
 
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Chinaski

Chinaski

Arthur Scargill appreciator
Sep 1, 2018
3,469
And no one can say one sort of suffering is worse than another, from a personal experience standpoint.
In fairness, they kind of can, and this is an enduring fallacy of this website. I can say with some conviction that someone suffering from something like, say, motor neurone disease, which will eat them away until they die, has a greater deal of suffering than someone who, to pick one example, is not having as much sex as they would like to.
 
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Al Cappella

Al Cappella

Are we there yet?
Feb 2, 2022
888
In fairness, they kind of can, and this is an enduring fallacy of this website. I can say with some conviction that someone suffering from something like, say, motor neurone disease, which will eat them away until they die, has a greater deal of suffering than someone who, to pick one example, is not having as much sex as they would like to.

On balance, of course you're right. In the face of something like mnd it seems silly to even suggest the person not getting their tickle on enough even belongs in the same sentence. But we know the human mind and what can happen. It can convince a person that lacking sex is a failure of unspeakable proportions, indeed a ruined life, leading to all sorts of distress—even enough emotional pain to end a life.

Yes, from an outside perspective the comparison seems absurd, and daft, even. I'm just saying I'm not in a position to judge anyone's suffering, certainly not on a site like this. Now our society will always think someone in a hospital bed, intubated, hooked up to all the electronics, is in worse shape than someone sitting in a recliner with their head in their hands. I know it's not necessarily true, because nothing is ever so straightforward…
 
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Chinaski

Chinaski

Arthur Scargill appreciator
Sep 1, 2018
3,469
On balance, of course you're right. In the face of something like mnd it seems silly to even suggest the person not getting their tickle on enough even belongs in the same sentence. But we know the human mind and what can happen. It can convince a person that lacking sex is a failure of unspeakable proportions, indeed a ruined life, leading to all sorts of distress—even enough emotional pain to end a life.

Yes, from an outside perspective the comparison seems absurd, and daft, even. I'm just saying I'm not in a position to judge anyone's suffering, certainly not on a site like this. Now our society will always think someone in a hospital bed, intubated, hooked up to all the electronics, is in worse shape than someone sitting in a recliner with their head in their hands. I know it's not necessarily true, because nothing is ever so straightforward…
Yeah, what you're saying here is technically fair enough - to clarify, anyone's reason to ctb is true to them and it's not for me to tell anyone it isn't, l too would bristle if others did that to me. Having said that, it's important that we do maintain perspective, all suffering is bad but frankly not all suffering is equal, and it would probably do us no harm to recognise that some people do objectively and genuinely suffer, in the truest sense of the word, a greater deal more in their daily existence than others.
 
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Al Cappella

Al Cappella

Are we there yet?
Feb 2, 2022
888
Yeah, what you're saying here is technically fair enough - to clarify, anyone's reason to ctb is true to them and it's not for me to tell anyone it isn't, l too would bristle if others did that to me. Having said that, it's important that we do maintain perspective, all suffering is bad but frankly not all suffering is equal, and it would probably do us no harm to recognise that some people do objectively and genuinely suffer, in the truest sense of the word, a greater deal more in their daily existence than others.

Yes, I can agree with that. Totally.
 
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ThriveOrDie

ThriveOrDie

We are already in hell
Jul 11, 2019
449
You have to be heavily sedated to go on a vent. They put people on propofol, fentanyl, morphine, benzos and other drugs depending on hospital. I doubt the person on the vent is suffering but IDK.

Anyway, I tend to wish I could trade places with the dying person that wants to live. I have chronic illness for 2 decades. It is hell. I would trade places in a heart beat.
 
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Y

YourNeighbor

Arcanist
Jul 22, 2021
423
But, there is perhaps a better way of saying that you disagree without disregarding op's stance.
I wasn't disregarding the stance, only noting that it is borne of ignorance. Ignorance is not a cardinal sin, by the way--we're all (even geniuses) ignorant of almost all of humanity's accumulated knowledge, each of us in our own unique ways. Note op did not follow up with "I saw my mother disintegrate before my eyes over a year of agony, losing control of her body and mind, and that is what I want for myself."

If someone came on here writing about how they'd love to be schizophrenic so they had more friends, I suspect that comment wouldn't get a lot of support. Not a perfect analogy, but you get the point. Trivializing terminal illness is fair game for correction--there are people here who have seen it or are experiencing it first hand.
 
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orange

orange

Experienced
Nov 19, 2021
243
You wouldn't write such nonsense if you knew what you were writing about.
Correct but also suicidal thoughts can be very irrational, I'd say this is a common experience.
 
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FuneralCry

FuneralCry

Just wanting some peace
Sep 24, 2020
42,604
In my case, I am only envious of those who are dead as they are free from all pain and suffering. I cannot be envious of anyone who is still alive. Your feelings are understandable though, as having to deal with a chronic pain condition with no cure sounds horrible. At least people with terminal conditions do not have decades of suffering ahead of them, even if what they are going through now is awful. I'm sorry you are in this situation. I wish you the best.
 
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W

waitingforrest

Elementalist
Dec 27, 2021
842
I wasn't disregarding the stance, only noting that it is borne of ignorance. Ignorance is not a cardinal sin, by the way--we're all (even geniuses) ignorant of almost all of humanity's accumulated knowledge, each of us in our own unique ways. Note op did not follow up with "I saw my mother disintegrate before my eyes over a year of agony, losing control of her body and mind, and that is what I want for myself."

If someone came on here writing about how they'd love to be schizophrenic so they had more friends, I suspect that comment wouldn't get a lot of support. Not a perfect analogy, but you get the point. Trivializing terminal illness is fair game for correction--there are people here who have seen it or are experiencing it first hand.
Ture, fair point. Mental and terminal illnesses, I think should be considered on the same turf. You do make a good point about the schizophrenic analogy, the grass is greener on the other side is kind of true.

I do excuse my claim on you disregarding the stance, perhaps it wasn't the best choice of words. I really like what you said about how we are all ignorant in different ways. There truly are some things that cannot be understood unless I have lived through them.
 
Y

YourNeighbor

Arcanist
Jul 22, 2021
423
Ture, fair point. Mental and terminal illnesses, I think should be considered on the same turf.
Not to be contrarian, but I fundamentally disagree. I get that someone in the depths of despair might feel like mental and terminal illness are similar, but they are not, if only because mental illness can often be treatable, curable, endurable, or merely temporary (and only rarely is it terminal). Terminal illness by definition cannot meet any of the first four criteria.

Many who trivialize terminal illness here might not do so with any ill intent, I get that too, but that does not mean such trivialization should be indulged, celebrated, or fetishized, which seems to happen here with some frequency.
 
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W

waitingforrest

Elementalist
Dec 27, 2021
842
Many who trivialize terminal illness here might not do so with any ill intent, I get that too, but that does not mean such trivialization should be indulged, celebrated, or fetishized, which seems to happen here with some frequency.
Oh yeah, absolutely dislike the fetishization or romanticization of terminal illnesses, just looking at the portrayals in media makes me shudder.

We can agree to disagree, I harbor no ill will towards you. I really enjoyed this debate. You really make excellent, thought provoking arguments that make me rethink my own beliefs. :D
 
LoneMisery

LoneMisery

Student
Jan 23, 2022
125
I purposely would go to the bar and sit next to people who had a cough and when i heard a vax person serving i would go hoping i got it. Ive been exposed up to 3 times that i know of and ive never gotten even a cold. I know the jealous feeling very well.
Anytime someone dies from a suicide i envy them. Very much.
Drinking alcohol and eating poorly has had a more painful experience than i wanted. Its too slow. I dont wear a mask as often as i can just hoping i get something.
I guess unprotected sex with multiple hookers has to be the only next option because im too much of a whimp to use a train or g
Very very envious and jealousy when i hear those things for sure...also would rather take their place because they prolly dont want to die as i do
 
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KuriGohan&Kamehameha

KuriGohan&Kamehameha

想死不能 - 想活不能
Nov 23, 2020
1,801
Wanting to trade places with someone who truly wants to live is an understable phenomenon. It is incredibly tragic when someone who is happy, has zest for life, and is excited to keep moving forward is taken abruptly and against their will.

Correct me if I'm wrong, but I believe it's the definite knowledge that your time is approaching is what you seek, rather than the physical suffering entailed by terminal illness. Or perhaps, the support that is provided for people with fatal diagnoses which is sparsely given to those with more benign conditions? The finality resulting from such a prognosis is one of the most grim, soul crushing things I've ever had to witness.

My grandfather had a fairly good life, up until his long term health condition became terminal during my teenage years. The state he was in during his last month was so harrowing, that even walking into his room and laying eyes on how enfeedbled he was would nearly bring me to tears. Over time, he lost his ability to breathe properly, and the lack of oxygen would make him delirious and completely out of it. Once you hear the death rattle, it's almost permanently burned into your memory.

The last days of his life traumatized me immensely. I will never forget how decrepit he was at the very end, and how those waste of space hospital staff treated a dying elderly man like a burden they couldn't wait to be rid of. To them, the loss of life was garden variety and nonchalant, assumably because they'd witnessed the same scene play out countless times in the past. There was no dignity in that environment.

Euthanasia is banned where I grew up, and my grandfather would never have entertained the possibility due to devout religious beliefs, so an option like that was completely off the table. If you're lucky, a sympathetic doctor might slip your loved one a little too much morphine once they are in palliative care.

I don't think anyone would willingly wish to experience that hell. On the other side of the fence, I had another family member suffer for years with an autoimmune condition that doesn't severely decrease the lifespan of most people, only to succumb to the agony it caused after losing her entire youth to chronic, incurable disease.

Despite having organ failure, doctors would not accept her quality of life was nonexistent and continually forced endless treatments, psych hospitalizations, and surgeries upon her until she ultimately died in misery anyway.

Her demise was just as tragic and senseless as others I had seen, except there was a certain solemness in the fact that she hadn't gotten to experience the happiness of a life well lived that my grandfather had before he became ill. The majority of her life was spent suffering and fighting a battle that no one could win.

Both situations were tragic and heartbreaking in their own ways, irrespective to each other. There's no use in comparing a subjective experience like suffering or trying to weigh it on any sort of objective scale. I don't think anyone can truly understand one or the other unless they have first hand expertise, and even then, individuals will vary greatly in how they cope with their circumstances.

Some people will bow out gracefully due to medical advances, and others will suffer right until the bitter end with no relief- there is a vast spectrum of outcomes in the human experience. Thus, there's really no use in speculation. We all have our reasons for wanting to exit, and only we can decide for ourselves what is too much to bear.

I understand the frustration you feel. I've had several people say to me that I should be grateful to have painful health issues that won't outright kill me, because simply being alive is a gift and one should learn to manage with what they have, especially at my young age. There really is no ideal outcome in these situations. I hope something will bring you peace.
 
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F

FuCrpsPain

Member
Jan 22, 2022
22
I had the same response when covid came out! Just hoping it might kill me.

I avoided a breast biopsy, not because I was afraid I might have cancer, but because the copay was $400. So instead I went back for an ultrasound last month. After I learned it wasn't cancer, I went to my car and wept.
I watched a friend fight for her life for years with lung cancer and I wished I could change places with her - she had loving family and an otherwise good life. I have nothing and would gladly switch places. She suffered for years despite having access to assisted suicide. I wish I had access to AS.
A long-distance friend of mine died suddenly three years ago. As sad as I was to hear it, my first response was jealousy.
@FuCrpsPain you're not the only one. I get it. I have a chronic illness too that's hugely underfunded and untreatable but also invisible so there's no support groups or kindness in the general culture. I'm completely alone.

Yes, very jealous. If only I could trade places with those who have good lives and want to live!

Don't want to ventriloquise the person you're replying to here but will add that there's a few "I envy the terminally ill" type posts that occasionally emerge here and imo anyone going through the actual experience of terminal illness would probably find it offensive to see their plight discussed in such flippant terms, and people who have seen terminal illness up close probably will not share your view. This isn't to have a pop at you, just pointing out that there are ways these posts can be offensive.
I understand that. It's not meant to trigger anyone. I live with a chronic illness called crps. It's the highest on the pain scale and is commonly called the suicide disease. I'm not saying I want to be going thru what he is going thru, I'm saying I'm already in so much pain and suffering and there isn't an end to my pain unless I cause it so I'm jealous that there is an end for his suffering. If I could take his place, the suffering and pain I would because at the end there is death. I would love for my husband's friend to heal and not die, because he wants to live... I don't know if any of this makes sense, my feelings don't have the right words to describe.
You could only claim to wish you were dying of illness if you have no idea what you are talking about. Hundreds or thousands of comments on this site go back and forth on many ways to die, and debate pros and cons over methods that involve hours, minutes, even split seconds. And you suggest you'd like to die over months or years, most likely in a horrific manner? That is what dying of illness looks like for most in our time.
It's not that I want to die in a horrible way. I just wish that fate would take me out because Everytime I get ready to I stop myself. Something or someone gets in the way of ending the suffering and pain. I just want the pain to stop. I'm exhausted from crying because my feet are so swollen I can't see my ankles. I'm tired of needing help to walk from my bed to the bathroom. I'm tired of feeling like my bones are being pulverized by a jackhammer, feeling like acid is melting my skin off, feeling like I'm engulfed in lava fire, all at the same time all the time. It never stops and there isn't a cure. I'm already dying from this illness.
I totally get what you're saying, I think. Because once you have that terminal diagnosis, it's over, it's got momentum on its own, the end is in sight. The responsibility is over. You don't have to carry it anymore. There is peace in that. And no one can say one sort of suffering is worse than another, from a personal experience standpoint.
Yes that's what I want. Peace in knowing the end is in sight. I can't explain what it's like living with crps. There isn't a cure, only living in hell fire or taking my own life. I want to die. I wish I was able to overcome the survival feelings. I've gotten myself to the edge and then I stop. I just want fate to intervene so there is no worry about stopping.
In my case, I am only envious of those who are dead as they are free from all pain and suffering. I cannot be envious of anyone who is still alive. Your feelings are understandable though, as having to deal with a chronic pain condition with no cure sounds horrible. At least people with terminal conditions do not have decades of suffering ahead of them, even if what they are going through now is awful. I'm sorry you are in this situation. I wish you the best.
I guess I could have worded my post differently. This pain is horrible and messes with my mind. I just want it all to stop. If I could take on my husband's friend suffering I would because I know he wants to live and I want to die. I have watched many ppl I love die from cancer, car accidents, and my best friend was murdered. It was horrible seeing what she went thru. It's hard wanting to die and not being able to pull the trigger myself (at least right now, getting closer)
Wanting to trade places with someone who truly wants to live is an understable phenomenon. It is incredibly tragic when someone who is happy, has zest for life, and is excited to keep moving forward is taken abruptly and against their will.

Correct me if I'm wrong, but I believe it's the definite knowledge that your time is approaching is what you seek, rather than the physical suffering entailed by terminal illness. Or perhaps, the support that is provided for people with fatal diagnoses which is sparsely given to those with more benign conditions? The finality resulting from such a prognosis is one of the most grim, soul crushing things I've ever had to witness.

My grandfather had a fairly good life, up until his long term health condition became terminal during my teenage years. The state he was in during his last month was so harrowing, that even walking into his room and laying eyes on how enfeedbled he was would nearly bring me to tears. Over time, he lost his ability to breathe properly, and the lack of oxygen would make him delirious and completely out of it. Once you hear the death rattle, it's almost permanently burned into your memory.

The last days of his life traumatized me immensely. I will never forget how decrepit he was at the very end, and how those waste of space hospital staff treated a dying elderly man like a burden they couldn't wait to be rid of. To them, the loss of life was garden variety and nonchalant, assumably because they'd witnessed the same scene play out countless times in the past. There was no dignity in that environment.

Euthanasia is banned where I grew up, and my grandfather would never have entertained the possibility due to devout religious beliefs, so an option like that was completely off the table. If you're lucky, a sympathetic doctor might slip your loved one a little too much morphine once they are in palliative care.

I don't think anyone would willingly wish to experience that hell. On the other side of the fence, I had another family member suffer for years with an autoimmune condition that doesn't severely decrease the lifespan of most people, only to succumb to the agony it caused after losing her entire youth to chronic, incurable disease.

Despite having organ failure, doctors would not accept her quality of life was nonexistent and continually forced endless treatments, psych hospitalizations, and surgeries upon her until she ultimately died in misery anyway.

Her demise was just as tragic and senseless as others I had seen, except there was a certain solemness in the fact that she hadn't gotten to experience the happiness of a life well lived that my grandfather had before he became ill. The majority of her life was spent suffering and fighting a battle that no one could win.

Both situations were tragic and heartbreaking in their own ways, irrespective to each other. There's no use in comparing a subjective experience like suffering or trying to weigh it on any sort of objective scale. I don't think anyone can truly understand one or the other unless they have first hand expertise, and even then, individuals will vary greatly in how they cope with their circumstances.

Some people will bow out gracefully due to medical advances, and others will suffer right until the bitter end with no relief- there is a vast spectrum of outcomes in the human experience. Thus, there's really no use in speculation. We all have our reasons for wanting to exit, and only we can decide for ourselves what is too much to bear.

I understand the frustration you feel. I've had several people say to me that I should be grateful to have painful health issues that won't outright kill me, because simply being alive is a gift and one should learn to manage with what they have, especially at my young age. There really is no ideal outcome in these situations. I hope something will bring you peace.
Crps is horrible. Wasting away without wasting away. There isn't an end like a terminal illness and if there was, maybe I'd be able to handle it better... My words in my original post weren't the best and I understand the criticism. I think in replying to some I'm coming closer to expressing my thoughts better. It's just really hard to see someone that wants to live lose their life when I really want to die. There isn't any blessing or gift living with a painful illness. If there was an ending maybe I could find some sort of joy in what life I had left. Not sure that makes sense... Not saying there is any joy in physical suffering, I personally know there isn't. But at the same time there is a peace of knowing the time is going to end. I don't have that unless I do it myself and as I get closer to that point maybe I'll have more peace. Thank you for sharing about those you loved.
 
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WearyHSP

WearyHSP

Student
Dec 12, 2021
164
This topic is a tightrope. Some people will always be offended. We're here so we can be honest but still there are politics, and no one sees things the same as others - that's just the fact. Clearly some comments are made given emotions and not intellectual pensiveness, but isn't that what this place is supposed to support? Emotional support?

I have an invisible illness that people don't "get." and yet anytime I've spoken at length with others who have this illness, every single one of them has said, "I wish I had cancer." Of course cancer is a terrible illness and people will be offended... BUT, where is the compassion for those who have an untreatable, invisible illness, that doctors aren't trained on and the the current culture stigmatizes and downplays? I would rather have an illness that gets a diagnosis (took me 15 years because no one believed me) and has a treatment - it might work, or it might not, but you'd have a limited time of suffering, not several, unending, downhill decades.

There's no hope for recovery because it's by far the least funded illness by the NIH: "the disease burden of ME/CFS is double that of HIV/AIDS and over half that of breast cancer. We also find that ME/CFS is more underfunded with respect to burden than any disease in NIH's analysis of funding and disease burden, with ME/CFS receiving roughly 7% of that commensurate with disease burden."
We are invisible and screaming for help and then we get reprimanded for complaining. At least that's what happens to me, 24 years into it and counting.

The other reason I aligned with @FuCrpsPain is that having an illness like cancer, or anything else with a high probability of death, means my suicide wouldn't be as catastrophic - it would help those left behind to find peace with my ctb. It would be nice not to have to make the choice ot ctb but have it made for me. I'm not an idiot - I know most cancer death are grueling and terrible for everyone involved.
I've lost friends to cancer, I don't wish suffering or loss of loved ones on anyone. But those friends, some of whom have since recovered, had all kinds of support groups and kindness and help. There's been nothing for me - I'm on my own. My illness doesn't count. I can't even get a social worker to help me.

I just wish people who invisibly suffer could get a little compassion.
 
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ThriveOrDie

ThriveOrDie

We are already in hell
Jul 11, 2019
449
This topic is a tightrope. Some people will always be offended. We're here so we can be honest but still there are politics, and no one sees things the same as others - that's just the fact. Clearly some comments are made given emotions and not intellectual pensiveness, but isn't that what this place is supposed to support? Emotional support?

I have an invisible illness that people don't "get." and yet anytime I've spoken at length with others who have this illness, every single one of them has said, "I wish I had cancer." Of course cancer is a terrible illness and people will be offended... BUT, where is the compassion for those who have an untreatable, invisible illness, that doctors aren't trained on and the the current culture stigmatizes and downplays? I would rather have an illness that gets a diagnosis (took me 15 years because no one believed me) and has a treatment - it might work, or it might not, but you'd have a limited time of suffering, not several, unending, downhill decades.

There's no hope for recovery because it's by far the least funded illness by the NIH: "the disease burden of ME/CFS is double that of HIV/AIDS and over half that of breast cancer. We also find that ME/CFS is more underfunded with respect to burden than any disease in NIH's analysis of funding and disease burden, with ME/CFS receiving roughly 7% of that commensurate with disease burden."
We are invisible and screaming for help and then we get reprimanded for complaining. At least that's what happens to me, 24 years into it and counting.

The other reason I aligned with @FuCrpsPain is that having an illness like cancer, or anything else with a high probability of death, means my suicide wouldn't be as catastrophic - it would help those left behind to find peace with my ctb. It would be nice not to have to make the choice ot ctb but have it made for me. I'm not an idiot - I know most cancer death are grueling and terrible for everyone involved.
I've lost friends to cancer, I don't wish suffering or loss of loved ones on anyone. But those friends, some of whom have since recovered, had all kinds of support groups and kindness and help. There's been nothing for me - I'm on my own. My illness doesn't count. I can't even get a social worker to help me.

I just wish people who invisibly suffer could get a little compassion.
100%! Thank you.
 
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brainpain2

brainpain2

Student
Sep 16, 2019
126
Today my husband found out one of his friends is in hospital, in a coma, on a vent. I feel bad for his friend but mostly I'm jealous. I'm jealous because he is closer to death than I am and he wasn't even wanting to... When all the covid stuff started and the news was saying how deadly it was going to be, I was somewhat excited. I was hopeful that maybe I wouldn't have to plan my death, I could just get covid. I get hopeful when I see a car speeding, I think maybe they will lose control and take me out, or if there is a tornado warning, I hope I'll go for a spinning ride to the clouds. When my doctor had to run tests on my thyroid, my first thought was I'm going to die of cancer, and I was happy... It wasn't cancer. Instead, later in life, I end up with a chronic pain illness that has no cure. It depresses me that I can't be as lucky as those on the verge of death. Watching movies like Final destination wishing I was next on fates list. Anyone else jealous of those that die from accidents or illnesses?
Are you me? I also ended up with an uncurable chronic pain disorder in life. Won't kill me but I'm jealous all the time of people that die. I've had people day "we'll at least it's not cancer!" When I would trade cancer and death for a lifetime of this misery .
 
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FuCrpsPain

Member
Jan 22, 2022
22
Are you me? I also ended up with an uncurable chronic pain disorder in life. Won't kill me but I'm jealous all the time of people that die. I've had people day "we'll at least it's not cancer!" When I would trade cancer and death for a lifetime of this misery .
I have crps. Highest on the pain scale, no cure, supposedly rare, commonly called the suicide disease, definitely under researched and finding a knowledgeable doctor is extremely difficult.
I hate living like this. I've tired everything my insurance covers, too poor to try stuff they won't cover. I just want it to stop.
This topic is a tightrope. Some people will always be offended. We're here so we can be honest but still there are politics, and no one sees things the same as others - that's just the fact. Clearly some comments are made given emotions and not intellectual pensiveness, but isn't that what this place is supposed to support? Emotional support?

I have an invisible illness that people don't "get." and yet anytime I've spoken at length with others who have this illness, every single one of them has said, "I wish I had cancer." Of course cancer is a terrible illness and people will be offended... BUT, where is the compassion for those who have an untreatable, invisible illness, that doctors aren't trained on and the the current culture stigmatizes and downplays? I would rather have an illness that gets a diagnosis (took me 15 years because no one believed me) and has a treatment - it might work, or it might not, but you'd have a limited time of suffering, not several, unending, downhill decades.

There's no hope for recovery because it's by far the least funded illness by the NIH: "the disease burden of ME/CFS is double that of HIV/AIDS and over half that of breast cancer. We also find that ME/CFS is more underfunded with respect to burden than any disease in NIH's analysis of funding and disease burden, with ME/CFS receiving roughly 7% of that commensurate with disease burden."
We are invisible and screaming for help and then we get reprimanded for complaining. At least that's what happens to me, 24 years into it and counting.

The other reason I aligned with @FuCrpsPain is that having an illness like cancer, or anything else with a high probability of death, means my suicide wouldn't be as catastrophic - it would help those left behind to find peace with my ctb. It would be nice not to have to make the choice ot ctb but have it made for me. I'm not an idiot - I know most cancer death are grueling and terrible for everyone involved.
I've lost friends to cancer, I don't wish suffering or loss of loved ones on anyone. But those friends, some of whom have since recovered, had all kinds of support groups and kindness and help. There's been nothing for me - I'm on my own. My illness doesn't count. I can't even get a social worker to help me.

I just wish people who invisibly suffer could get a little compassion.
Truth. Suffering with something that no one else sees and doctors can't seem to find a diagnosis for a very long time is what millions of ppl deal with on a daily basis. The "rare" illnesses are over looked unless it's something that kills right away or something physically seen... It's a struggle everyday to not feel like a burden, have your voice heard, not feel like you are complaining about it constantly. If I were to ctb I can imagine ppl saying "she wasn't strong enough" or blaming my depression when its the crps. There isn't any support for me, unless you count fb groups. There isn't a specialist doctor. There is barely any funding for research. It's exhausting trying to live. Eventually this illness will win and I'll finally have some peace. I look forward to that time but it would be nice if I didn't have to make that choice. I wish crps killed without me doing it.
 
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WearyHSP

WearyHSP

Student
Dec 12, 2021
164
Truth. Suffering with something that no one else sees and doctors can't seem to find a diagnosis for a very long time is what millions of ppl deal with on a daily basis. The "rare" illnesses are over looked unless it's something that kills right away or something physically seen... It's a struggle everyday to not feel like a burden, have your voice heard, not feel like you are complaining about it constantly. If I were to ctb I can imagine ppl saying "she wasn't strong enough" or blaming my depression when its the crps. There isn't any support for me, unless you count fb groups. There isn't a specialist doctor. There is barely any funding for research. It's exhausting trying to live. Eventually this illness will win and I'll finally have some peace. I look forward to that time but it would be nice if I didn't have to make that choice. I wish crps killed without me doing it.
Amen to everything you said!

I'm truly sorry for the level of pain you endure every day. I'm lucky that pain isn't my worst symptom as some with CFS/ME have. I can't imagine surviving for 24 years if I had that much pain.

I suppose people with illnesses like you and I make the statement that, "I'd rather have cancer" because our illnesses aren't understood - the culture doesn't recognize it, doctors aren't trained to treat them - it's denial from all directions. So there's an emotional component to these kinds of hardships - you have the illness and then you have the stigma, the lack of medical care, the lack of accommodations (despite being disabled - MY disabilities aren't typical so people aren't able to accommodate.) and so on.
Well, I'm preaching to the choir here. My point is, people don't understand the emotional hardship and isolation that comes from these types of chronic illnesses that only worsen over time, unless it's close to them. That said, after 24 years, my family still has NO IDEA what I go through every day. The loneliness and invisibility of it is enough to want to ctb. And, I don't have terrible pain like you.

But I do have horrific childhood trauma which repeats itself. My eye doctor recently said, "PTSD is treatable!" and I just looked at him dumbfounded. Is that what people believe? because it not my experience! I'd guess the trauma is 50 times worse than my illness. I've done everything a human person could do to resolve it, and it only worsens each decade.

I've shared this elsewhere: because trauma repeats itself, I was assaulted in my condo by a stranger and strangled and beaten in the eyes (more than 10 years ago.) When I saw he had medical gloves beneath his winter gloves, I realized he was planning to kill me and I felt absolute peace WHILE being beaten. So yeah, If I died of covid on a respirator, that suffering is nothing compared to the hardships that continuously repeat from trauma.

Do I sound angry? I don't mean to - it's probably because both my illness and my trauma have been invisible and no one's believed me my entire life. A lot of shunning from both ends.
 
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