Comment by SwellJoe | Hacker News Reader

Comment by SwellJoe | Hacker News Reader

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"I risk getting downvoted for this, but have you tried any dietary changes?"

Because you should be downvoted for this.

People who have long-standing health conditions, that they have perhaps battled their whole lives, don't need people on the Internet arm-chair quarterbacking their treatment. They have medical professionals that they've worked with for years and trust, they have almost certainly done more research than you or I about their condition, and they have heard the latest fad cure-all from everyone, everyday, for years. They get it on their facebook wall, they get it from well-meaning (but poorly informed) friends and family, and they get it from strangers on the Internet.

Don't be that stranger on the Internet. Your intentions are positive and laudable, your actions are not.

In short: Unless someone has asked for advice about treatment options for their chronic condition, it is probably impolite to offer it.

Source: Conversations with friends with MS, CP, disabilities, autism spectrum disorders, and various trainings in how to provide safer spaces for people with a variety of conditions.

I have a health condition that is just as serious as MS (and is similar to MS in some ways). None of my doctors (over a 20 year period) ever suggested that I change my diet, but for me, changing my diet is the closest thing to a treatment that I will ever see. I WISH that somebody had suggested that I change my diet, because if I had done it years ago, I might not have progressed as far as I have. So I'm sorry if the guy I responded to has had tons of people suggest to him that he should change his diet, but for me, it was the opposite. No one suggested it. I tried it on my own, out of desperation and despite my doctors poo-pooing the idea. And it worked. I guess I got lucky, but there are lots of stories just like mine.

The fact is that doctors are often NOT that helpful for people with complicated neurological conditions (no one knows this better than I do!), so some of us are left to fend for ourselves. Given that that's the case, I don't see what's so terrible about asking someone whether they have tried a treatment that some people have found to be effective. My perspective is that an elimination diet is worth a try for anyone with an autoimmune or difficult-to-diagnose neurological condition. That opinion is based on a lot more knowledge and personal experience than you have assumed it is, but it's true that I didn't make that clear in my comment.

The only reason I even responded to MyBunny was that he said that he was having "a hard time finding hope." I thought that if there was even a sliver of a chance that my suggestion could help him find hope, then it was worth getting downvoted to oblivion. But if my voice is merely one of a chorus that have suggested the same worthless idea to him, then for that I am sorry.

Ultimately, I do see your point, and thank you for your perspective, but I don't think that I can entirely agree with you.

Apologies for making assumptions about where you were coming from. I may have gotten a bit preachy and reactionary. We're both obviously coming from a place of wanting to be helpful.

Though I still think the advice to only offer treatment suggestions when asked is always sound. The Internet seems to exacerbate the problem of overwhelming amounts of unsolicited advice, which can breed its own sort of despair.

From my experiences in a hospital I've seen doctors that can hardly spend any time with a patient and it's really up to the patient and their advocate to look out for themselves.

Thank you so much for this. I have a chronic condition and I assure you that discussing it is the least exciting thing possible for me, and for the last 7 years the doctors and I have tried every damn thing at least twice. Everybody tries to help with concerned advice, but they don't get the pain of discussing the paleo diet for the 300th time (which didn't help the 3 times I tried it).

This reminds me of an NPR story[1] I heard a little while ago about Empathy Cards. Specifically http://emilymcdowell.com/products/treatment-on-the-internet-...

[1] http://www.npr.org/sections/health-shots/2015/05/07/40497653...

I don't think there is a problem suggesting changing diet in addition to "proper" medical treatment. Its when people are encouraged to use it in place of other treatments it becomes a problem.

Research into ketogenic diets is pretty new, (and as far as I am aware, has been shown to have positive effects on neurodegenerative diseases in rat studies). There is a possibility that it may help.

My opinion about offering unsolicited treatment advice has nothing to do with whether the suggested treatment is effective or not. My suggestion to not offer treatment advice to people with chronic conditions comes from a recognition that most people with chronic conditions receive exhausting amounts of advice from folks every day, and it is often not what they want to talk about, but politeness dictates they not simply say, "stop talking, you're not helping".

Certainly there may be gems of valuable input that may come from strangers on the internet, but with no other signals indicating quality, it is just more noise in an already complicated topic.

Again: In conversations with someone who has a chronic condition, unless the person has asked for advice (in some way) about their treatment, it is generally rude to offer your thoughts on the matter. Just as I wouldn't suggest you go on a diet if I think you're a little overweight or that I think you should be on antipsychotic drugs because I saw you get angry one time, your knowledge of a strangers situation is too low to be helpful. And, they hear it all the time, and most of the time the advice they get is bullshit.

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