This is exactly what I'm talking about.

One beer every 3 months is proof my diet is a problem? For a condition you know nothing about? Really. Fine, then it's useless, and I've surrounded myself with idiots, all of my careful testing and attempts to understand my condition have failed.

This kinda of nonsense, where I debate the very meaning of "me" to some extent is tiring. Even if I'm wrong in all of this, I'm not harming you, you're someone online, but I try really hard to not be a burden on anyone I come in contact with. I actually try to be a net positive to the world, in my small way. It's already hard enough for me to wake up every day and face the world without just ending my pain. Don't make me debate my sanity while I'm at it.

Ah planning the treats.

I’ll have a chocolate donut about once a month.

I have to perfect in my diet for days in order to enjoy it no penalty. A second one is not an option.

Nope. He does not need to cool down. He needs people to realize when "trying to help" is not helping. When it's actually about appearing smart or appeasing one's anxieties or showboating or controlling or getting nice points.

If you think somebody might benefit from your advice, you could ask. "Hey, I have been through X, would my opinion be useful?" But before you do that, maybe think about the vast number of people who have already jumped in to offer unsolicited, unhelpful, and unwanted advice. And maybe just trust that if a person needs your advice, they'll ask you for it.

> I think you need to cool down.

I think this is unfair. The response is probably calmer than what I would have passed back in my best effort, had I been the one engaged.

> move on if not interested, but blaming people for trying to help in a social setting

On HN (and with a higher bar), I would be blaming people for talking past me in seemingly bad faith.

No, the actual issue here is that people don’t understand that they need to have enough empathy to be able to follow a logical sequence of steps before speaking:

First, realize that the person with the chronic health issue has probably put a lot more time and effort into addressing the complexity of their experience.

Second, realize it is in fact exhausting to constantly get unsolicited advice.

Third, realize you presumably are not the only person this person with a chronic health issue interacts with and that most people do not take special care to avoid giving unsolicited advice.

Fourth, realize this means you should assume that this person is getting a lot of unsolicited advice.

Stop for a moment before speaking at this point. Ask yourself, is your additional one iota of advice is highly likely to be both completely novel to this person and efficacious for their issue? Your advice is unlikely to be both those things simultaneously but instead forces this person’s focus back on an issue they are likely trying to avoid thinking about.

Okay, given all that, I am not saying “don’t ever give advice”. All I would request of people is that most of the time, ask first. If your advice is critical, novel, and highly likely to succeed, perhaps intervene immediately. But otherwise, the person will appreciate this opportunity to decide whether or not to interact with input regarding their chronic issue, it’s very unusual that anyone takes care to consider how it feels emotionally to be constantly the person who needs to be told how to live.

Imagine you were telling someone what you had for lunch. You had a sandwich. They ask what toppings you had. You say you had these particular toppings. The person then says “you should try next time adding this other topping, that would have made your sandwich better and in fact would greatly improve the quality of your life”. Unfortunately, you’re allergic to this additional topping, which you dutifully inform the other participant in the conversation.

Okay, that’s fine. Maybe it would have made the sandwich better in their opinion, and sometimes that kind of stuff is okay to let go. But now imagine this conversation happening with multiple people every lunch every day for the rest of your life. Pretty soon you’d start wondering why the fuck all these people have such strong opinions about your lunch. You would also notice that none of these people ate any sandwiches with the topping they insisted would improve your life so much.

I have a chronic health condition that is better managed now, but at one point caused debilitating pain. I stopped talking about it and tried to avoid giving any indication I was unwell at all outside of intimate social settings, because the sheer volume of unsolicited input I got about how the right way to deal with the fact that a surgeon shredded the nerves in my abdomen was to take ginger and rub lavender essential oils on it, or just use CBD, or have you tried hopping up and down on your left foot on a Tuesday immediately following the vernal equinox...

I work with a couple of rather novel/unconventional treatments/“medicines” (kambo and ayahuasca). I find myself biting my lip hard at this topic because most folks have never heard of them and demand some kind of research backing the wild anecdotes surrounding them. They’re both incredibly potent and can treat a wide range of maladies, but are very demanding ordeals to actually go through. I’ve come to terms with not giving advice, and tell myself that he/she must want to be healed and they will ask if/when they want it. Often I simply want to bring them up, just to raise awareness, but even that very difficult considering just how “out there” they are (usually getting dismissed or raised eyebrows). Any suggestions for how to talk about these unconventional things without offending sensibilities?

I think close family relations and friends, you should ask if they want advice. For this type of recommendation, I (personally) would want to know the person so I could guess at what their reaction would be.

This is also more unconventional than typical, no one ever recommended I take ayahuasca, so for me personally it would be novel enough that it wouldn’t be frustrating to get recommended it by an acquaintance. This is my perspective.

I would caution against the mindset in the middle of your paragraph though (“they must want to be healed”). I wanted nothing more to be healed, it’s just after 36 months of being poked and prodded by medical professionals it always struck me as a little haughty that someone else I didn’t know at all would presume to know enough about my situation to think their advice would be useful. But this is just my experience, and I only ever got useful unsolicited advice a couple times.

I just think people need to be emotionally in tune with their conversation partners, and if you don’t know them well enough to read them then you probably don’t need to be giving them advice anyway.

> but blaming people for trying to help in a social setting is probably not the right way to look at it

And yet, the path to Hell is paved with ...

This entire comment thread seems like Exhibit A in why banana_giraffe doesn’t usually tell other people.

Exactly. Spent years hiding symptoms. When it got the point I couldn’t, I had a brief round of sympathy. Then people got impatient that I didn’t quickly “recover”. In that case recovery was over a year, just to get back to were I could hid symptoms again.

I'm not sure about 95% of doctors being incompetent. If nothing else they are much better trained than the average person offering advice.

I wouldn't say most doctors are incompetent, but I would say that most are automatons working to a checklist which probably hasn't been updated since they left school. Patient reports symptoms A, B, C? Order tests X, Y, Z, prescribe drugs 1, 2 and 3.

Now that's probably appropriate for (say) 70% of patients. But what about the other 30% of patients whose symptoms or conditions don't fit squarely in the checklist? That's when some kind of analytical/critical diagnostic skills are needed, and in my experience, very few doctors possess these skills.

Once you're in uncharted waters, they're not helpful. In fact, they're often actively unhelpful because they refuse to acknowledge that some things might be outside their expertise and they either need to actually hit the books, or do the work to find a specialist who can help you.

Great comment, sums up exactly what the issue is without resorting to shortcuts like "incompetent" that are more likely to offend than convince (something I've certainly been guilty of in the past). At this point, for mild to moderate healthcare-system interactions, I go to doctor's appt with a pretty accurate sense of what prescription and/or advice I'm leaving with. I basically consider it a fee I need to pay in order to get the legally-required prescription or referral I already know I need.

I’ve tried reading medical reports of patient complaints.

It is crazy hard. It’s like tech support on a Linux running Oracle with grandma.

What’s wrong with using shortcuts like “incompetent”? It’s not generally a good use of time to enumerate all the specific ways in which most professionals are incompetent, especially if you aren’t familiar with the field.

If they're 70% competent then you will be 70% wrong in calling them incompetent.

One thing you fail to mention / acknowledge is that what doctors are not doing is just running through check lists because that's what they are taught, but because they have to rule out a lot of stuff out first. In a lot of cases, the wrong type of medicine or diagnosis can be lethal.

I wouldn't go as far as the comment you're referencing, but the bar for incompetence at _human medicine_ should be infinitely higher than "the average person".

Yes, but they are worse than me at giving advice.

What's wrong with beer?

Contains gliadin and glutenin which promote the release of zonulin which regulates the tight junction in the intestinal epithelium. Disregulated tight junctions can lead to autoimmune disease.

At least that's the theory.

https://www.mygenefood.com/blog/zonulin-leaky-gut/