Comment by ddingus
Comment by ddingus 3 days ago
[flagged]
Comment by ddingus 3 days ago
[flagged]
>> My Wife has often said, "If Men were susceptible to a similar, or the same disease, it would see far more research and or funding.
I wish we would stop turning everything into a competition. As a man with a similar 'tricky' condition I can confirm the medical profession is generally shit with anything tricky regardless of your sex. I have experienced the exact same fight for treatment and investigation that I often read of women experiencing.
Like we put money in fixing homelessness, which affects mostly men right? Like we put money in suicide prevention which affects mostly men in every single country in the world? Feminism portrays a heavily distorted view of the world, such movement helped fix fundamental problems like women's voting rights, but it has a tendency for overcorrection and overestimating the number of problems caused by "the patriarchy" that are actually caused by "humans are shitty sometimes about some major issues"
Don't worry, we are susceptible to many pain conditions. Some of which are worse, and some of which women can get, too.
And of these more painful conditions the research is... Just as lacking. I do get the desperation for... Something. Anything.
Actually Covid saw the biggest research boost - my own is seen as a good control for long covid. A number of autoimmune conditions got similar increased interest. Right up until a political group decided covid research was a nice target.
(I've been in pain for 2/3rds of my life. Pain generally described as exceeding childbirth. There is never a lull. There is no treatment that works.)
I don't know how childbirth compares to the pain that I experienced during an incredibly pronounced bout of tonsilitis I had ~4 months ago, but if it's even 80% as painful, I don't know how one could live with that level of pain non-stop.
When I had tonsillitis, the pain was so intense and so persistent until the 3rd day of antibiotics, I was tempted to just throw myself off a bridge to make it stop. Had I been under the impression there was no way to make it stop in a few days, I suspect I would have.
Worth mentioning in these threads is that pain is a very personal experience. No two people experience pain the same way. We must have respect for each others' experiences of pain, because we don't know what it is like for them.
It's senseless to compare experiences of pain between people. Unless it's like "a pinprick" vs. "crushed by a motorcycle" or other obviously extreme contrasts.
>> When I had tonsillitis, the pain was so intense and so persistent until the 3rd day of antibiotics, I was tempted to just throw myself off a bridge to make it stop. Had I been under the impression there was no way to make it stop in a few days, I suspect I would have.
Easy to say, harder to do. The will to live is probably stronger than you realise. I experienced a short 2 week painful illness and felt similar to you. I later experienced the same thing for 2 years. You adapt and learn to cope.
About 30% of people who end up with my particular illness, do kill themselves in the first five years. Not that severity of pain makes sense person-to-person. Pain is personal. The worst pain is the worst pain you've ever felt, and it's never surprising if you do something about that. (Your worst pain... Was yours. Is yours. Don't try and compare it. No one else entirely gets what yours was like.)
However, if you do survive the first five years... You become unlikely to suicide out of it. You've learnt to live in it.
I think the stats on that are fairly similar to endo, from what little research that there is. If you can make it past the first few years of everyone ignoring you and calling you weak, and telling you to suck it up, you are now better prepared to deal with the daily mental siege.
(Though you are under siege. And sometimes those walls do collapse, and you're broken again. You can't necessarily take on more, just become you're stronger - you're stronger but you're spending all the extra effort just to stay alive.)
But to end on a completely different note, that can make a few people stare: I'm in pain in my dreams, too. I don't remember what it's like without.
Honestly it's probably just because the condition responds well to hormonal therapy. If you've got a cheap and effective treatment available for a condition it's hard to justify spending research dollars on digging deeper into it (particularly something as strange as Endometriosis, eg. where do you even start looking).
The strong genetic component also makes it somewhat unlikely that it's something we'll be able to ever eliminate completely but perhaps there will one day be targeted drugs that can stop disease progression. It's good to see more research dollars being made available in recent years.
There's a lot of other conditions that receive a similar lack of attention, for a common male analogue "chronic pelvic pain syndrome".
I advise people to at least consider the “years of life lost” approach to thinking about this [0]
Prostate cancer and breast cancer suck. All cancer sucks, it’s a blight on civilization.
Don’t pit diseases against each other like that. They’re not sports teams.
The money is not infinite in any sense so it is for many pragmatic purposes a competition, the diseases with more attention get more research, so it's in the reasonable interests of the people to advocate for the diseases that are most likely to affect them personally.
For sure. I would like to point out for readers to think about the fact that if you are, say, a guy in your 30s, the women close to you getting breast cancer will also have a profound impact on your life. Likely a greater one than dying of prostate cancer in your 80s.
Maybe (hopefully) neither of those happen! Maybe you get prostate cancer in your 30s! I just hope one can realize that getting the disease oneself is not the only way the disease can affect them, far from it.
And yet you chose to reply to this comment instead of the parent :)
CW is a thing, cant's wish it away. Best to work on rules of engagement and being at least slightly productive about it. Small steps like https://www.astralcodexten.com/p/but-vs-yes-but. Seems trivial, but I'd love to see more informal rules like this enforced in practice.
From what I understand, while in these two topics it is true that gender disparity sways towards women, in others it tends to sway the other way.
[0] https://www.theguardian.com/education/2019/dec/18/women-have...
[1] https://pubmed.ncbi.nlm.nih.gov/33232627/#:~:text=NIH%20dise...
I think this topic is better discussed without displays of victimhood anyhow (or maybe all topics are).
According to the American Cancer Society, it is estimated that there will be over 62,000 more cases of breast cancer than prostate cancer in the US this year, and will kill over 6000 more people.
>The American Cancer Society’s estimates for prostate cancer in the United States for 2025 are:
>About 313,780 new cases of prostate cancer
>About 35,770 deaths from prostate cancer
https://www.cancer.org/cancer/types/prostate-cancer/about/ke...
>The American Cancer Society's estimates for breast cancer in the United States for 2025 are:
>About 316,950 new cases of invasive breast cancer will be diagnosed in women.
>About 59,080 new cases of ductal carcinoma in situ (DCIS) will be diagnosed.
>About 42,170 women will die from breast cancer.
https://www.cancer.org/cancer/types/breast-cancer/about/how-...
Looking through these three graphs, there's more to it than that.
Breast cancer mortality by age: https://www.cancerresearchuk.org/health-professional/cancer-...
Prostate cancer mortality by age: https://www.cancerresearchuk.org/health-professional/cancer-...
Testicular cancer mortality by age: https://www.cancerresearchuk.org/health-professional/cancer-...
> I don’t think women get to keep playing victim while receiving equal treatment
Please don't comment like this on HN, no matter what you're replying to. It's not what HN is for and it destroys what it is for.
The reason why breast cancer became a cause celebre is that it really was a taboo disease that couldn't be talked about. Cancer generally, but breast cancer even more. There was a time when "awareness" really was important because people were not aware.
That progress has happened with it doesn't mean much to things like endometriosis, which has a mean time to diagnosis of ~a decade, a point made in TFA. People commonly suffer undiagnosed with it for ten years due to a collective failure. Finding a cure might be very difficult, but fairly rapid diagnosis really shouldn't be, it's not like Alzheimer's.
The numbers presented are stark: "Yet, it stands almost entirely alone in terms of how little funding the condition receives relative to the absolute number of lives it irrevocably alters for the worse: 10% of women (or 190 million) worldwide, with only $29M earmarked for them."
That's really bad. Like, really bad. It's not surprising that women might get very mad about this state of affairs.
The individual suffering from it probably shouldn't be lumped into some macro-social group of people who are 'playing victim while receiving equal treatment'. They're a person suffering from an extremely painful condition by no fault of their own. It could be your mom, your sister, partner, friend. How much money is raised for breast cancer makes no difference for their circumstance.
What's worse is that there are countless stories of women being denied care and treatment for this condition. It goes undiagnosed for years. Yet it's known to be debilitating in some cases. That's outside the bounds of normalcy and isn't made any better by hypothetical equal treatment.
> I pity you for having to wake up every morning with such hate in your mind
Please don't comment like this on HN, no matter what you're replying to. It's not what HN is for and it destroys what it is for.
There's no question that diseases like endometriosis and breast cancer needs to go. The medical research community is very self-critical about anti-female biases and there are numerous papers and articles about it. And that's good. If endometriosis is not getting the attention it deserves, then push for it by all means. Men don't really understand it for obvious reasons. But it isn't a big task to get their support by creating awareness. Articles like this is a step in that direction.
But can we please avoid dragging men through the mud in matters they have no awareness or influence on? Why must a top-level comment about endometriosis, a disease that affects only women, implicate men in anyway? What makes you feel that men are fine with watching their female kin (or any women) suffer from any of those? Why would men like me even be reading this article if we aren't open to the experience of the others? Let's consider the fact that prostrate and testicular cancers don't receive anywhere near as much attention as breast and ovarian cancer. So the top comment is rhetorical and objectively false. Imagine if a man you know gets prostrate cancer and someone comments that there would be better treatment for it affected women too. How would you feel?
I hate saying this here on the comment section about an important medical condition. Can we discuss women's issues objectively without looking for ways to blame men somehow? Why such hostility against men? I see this far too often and on far too many random topics - it's disheartening and depressing. Look at the way the discussion thread progressed. The top comment that mentions men unfavorably and unreasonably is upvoted and defended, while the opposing views are passionately argued against and even flagged. This is actually a recurring and unhealthy pattern on HN. Expressing male perspective is an easy way to get flagged - even if no hostility is intended (mods please note). Is this how we're going to achieve awareness on gender-specific issues and gender parity?
Where in my comment do I even mention men? I was responding to a hateful comment from a person, not an entire gender.
Also, I guess I didn’t state my gender anywhere (I did not think it would be so relevant! Apologies for not realizing this), but I am a man. So I guess I expressed a “male perspective”. Hopefully that brings some joy to your day.
Sarcasm aside, I do think there may be some misunderstanding about how funding and advertising works for disease research. I am by no means an expert, but have found myself deeply embedded in this area for a while.
I’d be happy to talk with you more about these issues, if you’d like to drop a way for me to get in touch with you on signal, matrix, email or phone.
I'm not talking about your single comment. The entire problem here is the top comment and the peculiar responses to it. Many of your objections apply to that top level comment too. Yet you chose to reply only to people who objected to that.
Now, I did consider the possibility that you are not a woman. But that doesn't change the outcome, and neither does your sarcasm. People showing biases against their own kind is not unusual and that doesn't provide the missing justification. People sometimes aim for the easiest target and sometimes it's their own kind. Men showing bias against men is still bias and it's still not justified. Your 'male perspective' hardly invalidates those of the others.
And no, I don't want to discuss anything in private since it's hard for others to see the bias or point out any issues. And I don't agree with your argument on funding and advertising, since I have been at the receiving end of it in an extreme manner. You can quote as much technicality as you want, but that doesn't invalidate the fact that prejudices cause harm. Unfortunately, the modern society is oblivious of the boundary between empowerment and prejudice. I'm not against women in anyway and I sincerely wish for their well being too. All those problems can be solved cooperatively and without this hostility and the us-vs-them mentality. Instead, this sort of negative reinforcement will only splinter and harm the society in the long run. Reverse of sexism is still sexism, and it achieves nothing.
I know your intention was simply to raise the issue of gender biases in medical research resource allocation, but it set off a gender flamewar, and that's just the kind of thing we're trying to avoid on HN. It's important to think about the consequences of the comments we post, and it was predictable that this kind of thing would happen.
For what it's worth, I saw the comment earlier and thought "not great but don't want to silence a valid point about gender biases in something as important as medical research", but looking now at the flamewar that's resulted, I'm afraid we just have to uphold the guidelines.
Another thought that came to mind when I saw your comment:
Over the years I've had my own experiences with illnesses that cause great pain, distress and limitations on life options, and during those times I often had thoughts along the lines of "people in my category with illnesses like this just aren't considered important enough to attract research funding and care for our plight".
Having continued to look into the topic very deeply, another explanation arises: conditions like this (complex disorders involving autoimmunity – even of the relatively mild kind that I had) are just very difficult to research, because as soon as you start studying a cohort of patients, it turns out to be very difficult to find consistent factors that explain the condition.
My understanding is that endometriosis (and I have learned a little about it from seeing loved ones being diagnosed with it or evaluated for it) is that it's of the same kind; it seems to be at least partially an autoimmune disease (or frequently co-morbid with autoimmune diseases) and, as the article states, it has been found to be extremely difficult to explain, let alone treat. We see similar obstacles with other autoimmune illness like ALS and MS, both of which have had huge amounts of funding over the years but still elude researchers' attempts to even explain them, let alone cure them.
It just seems that some illnesses are extremely hard to explain and cure, even with vast amounts of money invested in them, and that's particularly the case with anything involving autoimmunity.