Comment by ibash 8 days ago
You should ask them if they want you playing doctor.
I have a chronic disease, not fatal, and totally manageable. But the most annoying thing is when someone finds out and suddenly pretends to be the expert.
Of course my doctors and I investigating it for years were completely wrong! I should’ve ate more apricots!
Please just check with them if they want their limited time spent like that.
>dont get why that upsets you.
Because this often sounds like people think you haven't tried (almost) everything yet and of course they might have a solution.
I think your and parent commenter's situation and reaction are polar though. One was in the situation where they receive an unwelcome advice all too often, the other one would like more attention but never got one.
Notice than you are prepared to do something you are not really iterested in and possibly don't even need - only to give some 3rd party a satisfaction as a "thank you" for their attention.
Well, it's not a taboo (at least I've read it as if the person is just tired of it).
But generally you can just ask something like "Will it be fine with you if you I share a piece of advice?"
This works even better if you tell why you think this might be relevant at all (for example if you have some expertise or have a very similar experience yourself).
The problem is that when you are trying to accept your fate and come to peace with it, and everyone else around you is trying to give you false hope. It's hard to break free from the constant futile wishful thinking if everyone around you is doing it for you.
Sometimes you should just let people work with their doctors and come to peace with their situation.
If I was dying of cancer, and someone told me to eat apricots, I might shove the apricots down their meddling throat.
It can be bit annoying because people people think "can't hurt to try" but there's thousand unfounded things to try, little time, no way to pick and some of them could hurt. There's no harm in listening to ideas, being expected to implement them is another thing.
a) Nobody here is talking about unfounded things nor demanding anyone do anything.
b) There are not thousands of things to try. In fact in most cases there will be no options since you will need to be in a clinical trial, asking a Doctor to try something unproven and unethical or need substantial resources.
a) Well founded things are roughly the things your doctor recommends. The rest is unfounded. Some unfounded things might really be worth trying if you have time and strength. Most aren't. Yet people who know you that mean well but have very limited capacity to evaluate what is worthwhile and what is not will firmly believe that the idea they are bringing you is the one that will cure your illness and the only hurdle is convincing you to apply it. That's what gets tiring.
b) In most cases there are just a few things or no things that actually might work. But there's thousands of ideas floating around of what people say might help. Ranging from "you must eat a spoonful of this spice daily" to "there's this small lab on the other site of the planet that make this expensive substance that will cure you but what they do isn't technically legal and might kill you".
I think the point here is that the OP was asking for moonshot suggestions...and people responded. Whether the person with the illness wants to hear these suggestions or not is between them and the OP. It is a sensitive area and people are all over the place in how they want to deal with it and its important to respect that.
> Nobody here is talking about unfounded things nor demanding anyone do anything.
You sure? There's people commenting "just checked google scholar" and naming random plants without citing anything.
> I would probably eat the apricots and tell them it was fantastic, even if it had no effect.
You might for the first. Maybe the second. Probably not for the fifth. Certainly not the tenth. You may be tempted to hit the fiftieth.
If everyone around you feels the need to help, and provides the same insights, because they're not experts, then they're providing you the same repeated insights that you encountered at the beginning of your journey. A journey you may already be decades into, and having the same information shoved down your throat, day after day after day.
There is a reason that "Have you tried yoga?" is a meme in the chronic illness groups. Yes, it may provide some limited help, like most exercise. But 3652 days of hearing about it, later? Your patience might not have lasted.
Not everyone wants to be reminded of their situation or turn major aspects of their life into a struggle.
first: the person who doesn't want to be reminded is probably not the person that is approaching you and actively telling you that they are approaching the end of their life.
second: speaking to them about their plight isn't the struggle; DEATH IS -- and we're all in that same boat.
Telling people that you're terminally ill doesn't necessarily mean you're desperate to avoid death. It can be that you want to make the most of the time you have left, or ask for help with doing that, or need reassurances about protecting loved ones, a legacy, getting creative or scholarly work out into the world, or need help dealing with your fears/regrets or...many other things.
I don't get this existential fear of death many people have. Entropy is a fundamental fact fo existence. I think a lot of people are fer less concerned with dying as such than they are with minimizing the suffering, loss of autonomy, or inability to prepare that often precedes it.
Same boat with having a chronic illness, not fatal, but no cure either. It gets tiring wading thru all the snake oil salesmen selling false hope. And it isn’t them directly, because my older family members will hear about it with “have you tried…”
> I should’ve ate more apricots!
Did you mention apricots deliberately? Apricot pits were a huge, huge alternative medicine in the 1970s under the name Laetrile. Proponents said that Laetrile would cure cancer and was being covered up. The FDA banned it, saying that it accomplished nothing other than potential cyanide poisoning. Meanwhile, tens of thousands of patients a year went to Laetrile clinics in Mexico and spent tons of money on it. Laetrile was smuggled into the US from Mexico, second only to marijuana. Enthusiasm dwindled after studies failed to find a benefit. (Just some hopefully interesting history about apricots.)
A news article from the time: https://timesmachine.nytimes.com/timesmachine/1977/11/27/939...
I have a friend who is an MD, and he recently asked me what I’ve been doing to manage my seborrheic dermatitis. Since dermatologists have no cure for it, we often have to resort to anecdotal treatments. Moreover, big pharma doesn’t invest in studies for treatments they can’t patent. Blind trust in medical professionals isn’t necessarily wise. Anecdotal solutions still hold significant value, in my opinion
dont get why that upsets you. I have had a chronic disease my whole life and one of the people who offered help completely saved my life.
If anyone else told me to eat apricots Id be grateful for their time and attention.
I would probably eat the apricots and tell them it was fantastic, even if it had no effect.
Sorry I just have rarely seen my friends or family offer any advice.
- Back to OP, Ive always remembered Paul Stamets recommending the stamets-7 mushroom blend with research papers talking about recession. no idea if it works.