[anon84873628]

I find this comment to be downright insulting to the parent. You manage to:

1) Call them entitled for feeling angry 2) Remind them that other people have it worse 3) Imply they're stupid for imaging things could work any other way

And then try to defend your obviously immature, unproductive, and unsolicited criticism in the "I'm just being logical!" excuse.

The parent didn't go on a screed and rage at the world. They didn't try to claim their anger is righteous. And they certainly didn't ask you to play two bit therapist.

Rather, they shared a totally reasonable and relatable emotional response to the situation they are in. I personally found it relevant and insightful to the discussion.

I highly encourage you to reevaluate to how you respond to these sorts of comments in the future.

[southernplaces7]

I see nothing insulting in my comment, unless you think that just so much as questioning any of the premises of an emotional response in someone suffering is automatically an insult. In that case, you're just wrong and irrationally so.

Being sick doesn't make a person free of possibly feeling entitled or coming to unreasonable conclusions, nor does it make it wrong to question their feelings. I did so fairly politely. In my comment above, I was honestly asking for them to clarify who they think is worth being angry at, and why. I also explained reasonable reasons for why it's misdirected to claim as unfair a very general thing that's removed from you specifically only because it hasn't yet gotten around to creating relief for a problem you have, in a complex world full of problems that can't all be solved all at once or in just the way any one person desires.

This is a reality that all of us live with, so how the hell is it insulting if someone points it out?

>The parent didn't go on a screed and rage at the world. They didn't try to claim their anger is righteous. And they certainly didn't ask you to play two bit therapist

No, but they commented about their problem in a comment thread where people comment back and debate randomly. I don't give shit one about being anyone's therapist, but if you mention something personal, in a comment thread of all things, expect the possibility of someone responding with questions or opinion, like you yourself are doing. Should I feel insulted too?

I too have a long-term, very tedious and problematic health condition I need to deal with day by day, and it has no real medical remedy yet. I try to temper my frustration though. I understand that some things just aren't easy to fix.

[anon84873628]

Please, you didn't just ask genuine innocent questions. You assumed many things about the OP's mindset then passed judgment on it.

You refer several times to argument and debate but you're tilting at windmills. The OP didn't make an argument. The closest thing is "Such is the state of medicine for profit, I guess." which is more of a resigned, bitter observation than overt indictment of capitalism.

If you want to use that as a prompt to say why no other funding model is better, then ok fine. But there are polite ways to do it which acknowledge the legitimacy of the person's feelings.

What's different about my comments is that they address things actually in the text and are in the spirit of bystander intervention and setting the tone of the commons.

[JohnMakin]

I genuinely appreciate these responses because you state them much calmer and clearer than I can. To me, and I’m not accusing anyone here of this, these discussions feel really dishonest or at the very least completely unempathetic. I see in another comment this user says they feel sympathy, but clearly not empathy. and that’s fine to me! very few people have experienced what I have and will experience, in the specific way that I have, and my heart personally reaches out to anyone else that deals with some health condition that limits their quality of life or worse. I have, however, spent a ridiculous amount of time in the healthcare system, for a variety of reasons other than this specific topic, and know that this kind of callousness is more of a feature than a bug. To my mind, it’s also extraordinarily inefficient.

I’ll pose an argument to the rationalist crowd that I feel likes to think and feed deeply off these types of discussions:

say I’m destined to create the cure for cancer or bring about the singularity or whatever. I’m not, but let’s say I was. And I fall and hit my head one day and die because some billionaire decided that my condition wasn’t worth investing a miniscule fractional percentage of his wealth.

would that be wasteful?

[JohnMakin]

It is, which is why I'm not really going to engage with it directly. honestly, this attitude is so insanely common and I struggle to understand it personally so I dont really engage with it much. In real life people often struggle to understand, like, if you look at me I "look" fine, yet, I am mobility limited and have to use a cane a lot. They'll be casually dismissive about it like "oh, there's gene therapies now, someday they will cure you." Like, no, and I still have to live with it until and if that day comes (it probably will not). Saying things like that diminishes the very real struggles I deal with for pretty much no reason at all and is really callous, even though people are often unaware of how it sounds.

I'm also being purposely vague here to protect my privacy but I think most people if they had a condition that (and this is all true):

- causes severe pain and limits mobility to the use of a wheelchair over a period of time. No ability to exercise or have sex after it has progressed enough;

- Limits your ability to procreate because of the above bullet point but also because of the high risk of passing it off to offspring

- A cure exists but society hasn't deemed you special enough to put time into it

That.. wouldn't make you angry a little bit? I don't have to even blame anyone or anything to be allowed that. It's enormously frustrating. I'm not being entitled by being frustrated and angered by it, that idea is of course perfectly absurd. As is the idea that the anger needs to be "directed" anywhere. I guess I maybe drink a little too much and that's where it goes? honestly, who cares? And if I may borrow the parlance of the GP comment, their doesn't seem very "logical" from my POV. As is the downvoting swarms that usually accompany any kind of sentiment against the Almighty Altar of Capitalism. I'm not even making a critique of it, or offering an alternative, because I don't have one, but I don't need to provide one. It does suck, albeit for a small amount of people. But I guarantee you if you added up the sum of rare but probably treatable/curable diseases that we havent spent time on because of the rarity, the sum of those people is probably a significant chunk of the population.

[southernplaces7]

For what it's worth, I actually sympathize a lot with your frustration and have felt the same, but was honestly questioning if you were arguing from some sort of real claim that it's unfair for you to not have a solution now, or just from general emotional frustration.

For the first one, my arguments above, for the second one, fair enough, it happens to anyone suffering enough from something, and though I've tried to calm and redirect it when I feel that way, it's hard to pull off.

You also didn't explain, and i'm honestly curious: is this something that has no remedy for someone who's an adult, or something that has a treatment, but it's too expensive for you?

>But I guarantee you if you added up the sum of rare but probably treatable/curable diseases that we havent spent time on because of the rarity, the sum of those people is probably a significant chunk of the population.

Well yes, but there are also many much more widely devastating problems that we can also treat, but which haven't been fixed yet, and the reasons for that are way too complex to blame any one thing, or capitalism. Governments and all their immense resources are around too, yet they also don't quite seem to get around to fixing so many things that have solutions. Again, comparing the real world with your desires is never going to work. The world needs to be compared with its previous states for a fair sense of perspective.