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It was immoral of this acquaintance to tell you such a graphic story if he knew about your condition. If he was truly compassionate he would have kept it to him

It was immoral of this acquaintance to tell you such a graphic story if he knew about your condition. If he was truly compassionate he would have kept it to himself or formulated it more tactfully instead of putting this into your mind. Maybe he was abusive towards you.

at_a_remove 6y ago
Hardly. I have been aware of how the condition turns out almost from the beginning. You see, one of the hallmarks of it is extreme abdominal pain, which easily eclipsed my broken bones or other items like having a gallbladder infection due to stones. I am told childbirth and having an appendix rupture also aren't as high up on the scale, although neither have happened to me. After a few of those episodes sans painkillers (and of course feeling like death would be preferable to continuation of that state) I went hunting for information since doctors are typically uninterested in pursuing the concerns of teens. Once I matched everything up, the medical literature was not shy about what the endgame looks like; after confirmation with some unlikely tests, I was largely on my own to deal with this, which meant more literature dives and even more unattractive stories. So when he relayed this story, my internal reaction was more of a nod, "yes, that's how it tended to go back then," a bit like hearing old stories of the agonizing, inevitable deaths of those who contracted rabies, because by then it was just another data point in a straight line. That's not immoral at all. Immoral, to me, is hiding this sort of thing from the people to whom it will happen, because if you do not know, you cannot plan around it. Being uninformed removes agency, and that's what we're discussing here -- do we allow other humans legal agency over their deaths, since they haven't any over their births?
- JesseMReeves 6y ago
  If it was not obvious: I am deeply sorry that you have to deal with a severe condition. I am just a random internet stranger, but hope for you that treatments that will alleviate it can be found soon. Staying on top of the literature will help you. It is a sensitive personal decision whether you want to know what may happen to you in detail, or not; and nobody should make this decision for someone who is affected by disclosing graphic stories. Most people would therefore be too considerate to pass on such stories, so your friend may be a bit of an „outlier“. That’s all I wanted to say.
  - at_a_remove 6y ago
    Not knowing makes so many more decisions for me, however. Non-disclosure of the reality affects so much. Consider the range of decisions that might be made by one in a state of "blissful ignorance." 1) I consider this the largest: the decision to reproduce or not. First off, it runs the risk of burdening offspring with the exact same condition. Then there is the "can I even manage to raise offspring?" question, at least to the level of the average parent? 2) Similarly, seeking a partner to raise that offspring with. Imagine you had a spouse who had been kept unaware of the situation, and so you were unaware of the situation, and then you were rather suddenly burdened with taking care of someone through a prolonged decline. Would that have seemed fair to you, not to have known? 3) The rest of life planning is almost trivial next to the first couple of issues, but you think about retirement, how one's life is spent given the expected years, and so on. Non-disclosure is a horrifying trap for more than just the patient. I would find someone who would not disclose to be inconsiderate, frankly, similar to in kind, though not in degree, as someone not warning you of a danger in a road you are about to drive down.

at_a_remove 6y ago

Hardly. I have been aware of how the condition turns out almost from the beginning. You see, one of the hallmarks of it is extreme abdominal pain, which easily eclipsed my broken bones or other items like having a gallbladder infection due to stones. I am told childbirth and having an appendix rupture also aren't as high up on the scale, although neither have happened to me. After a few of those episodes sans painkillers (and of course feeling like death would be preferable to continuation of that state) I went hunting for information since doctors are typically uninterested in pursuing the concerns of teens. Once I matched everything up, the medical literature was not shy about what the endgame looks like; after confirmation with some unlikely tests, I was largely on my own to deal with this, which meant more literature dives and even more unattractive stories. So when he relayed this story, my internal reaction was more of a nod, "yes, that's how it tended to go back then," a bit like hearing old stories of the agonizing, inevitable deaths of those who contracted rabies, because by then it was just another data point in a straight line. That's not immoral at all. Immoral, to me, is hiding this sort of thing from the people to whom it will happen, because if you do not know, you cannot plan around it. Being uninformed removes agency, and that's what we're discussing here -- do we allow other humans legal agency over their deaths, since they haven't any over their births?

JesseMReeves 6y ago
If it was not obvious: I am deeply sorry that you have to deal with a severe condition. I am just a random internet stranger, but hope for you that treatments that will alleviate it can be found soon. Staying on top of the literature will help you. It is a sensitive personal decision whether you want to know what may happen to you in detail, or not; and nobody should make this decision for someone who is affected by disclosing graphic stories. Most people would therefore be too considerate to pass on such stories, so your friend may be a bit of an „outlier“. That’s all I wanted to say.
- at_a_remove 6y ago
  Not knowing makes so many more decisions for me, however. Non-disclosure of the reality affects so much. Consider the range of decisions that might be made by one in a state of "blissful ignorance." 1) I consider this the largest: the decision to reproduce or not. First off, it runs the risk of burdening offspring with the exact same condition. Then there is the "can I even manage to raise offspring?" question, at least to the level of the average parent? 2) Similarly, seeking a partner to raise that offspring with. Imagine you had a spouse who had been kept unaware of the situation, and so you were unaware of the situation, and then you were rather suddenly burdened with taking care of someone through a prolonged decline. Would that have seemed fair to you, not to have known? 3) The rest of life planning is almost trivial next to the first couple of issues, but you think about retirement, how one's life is spent given the expected years, and so on. Non-disclosure is a horrifying trap for more than just the patient. I would find someone who would not disclose to be inconsiderate, frankly, similar to in kind, though not in degree, as someone not warning you of a danger in a road you are about to drive down.