I hear that. It took a reluctantly ordered sleep study for doctors to even take my case seriously (since I was in incredible shape). Then when I picked up the machine they said they were expecting someone morbidly obese.

Sometimes people just get a bad luck of the draw, and no amount of "hard work" can fix genetics.

Sleep apnea is like knee pain in that loosing significant weight either makes a huge difference, or does nothing. Unfortunately, if it doesn’t work for you people will still constantly bring it up.

As someone who struggles with weight and chronic conditions.

There are low hanging fruit. Dropping weight, removing processed foods, exercise are your bare minimum of what everyone should try for solving Medical problems.

Now a lot of problems can be solved this way. Just not everything.

I suffered exercise intolerance for decades. No mater how hard I tried I would need two weeks of recovery after any work out. Turned out I had underlying problems that none of the what I mentioned above were going to fix.

However I still feel strongly that if I’m going to complain to a doctor, I should be doing my part with diet and exercise.

I have a similar exercise intolerance, could you enlighten me to what the underlying problem was?

Two issues. IIH and Sjogrens.

Idiopathic intracranial hypertension Also called: pseudotumor cerebri.

Description A condition that occurs when pressure inside the skull increases for no obvious reason.

Thank you for sharing. I'm currently pursuing a POTS evaluation.

Welcome.

Had POTs quite bad.

Spinal tap gave a year of relief.

Now I use Diamox. Huge improvement

My spouse has something similar, do you mind sharing what the underlying problem was?

Two issues. IIH and Sjogrens.

One of the things that was a revelation to me about sleep apnea… it's not CAUSED by your weight. Here, I'd been carrying that around for years, and feeling like a failure.

I brought it up to my sleep doctor. I said I thought I had it because of my weight, he laughed at it. He said, "If you are overweight, that can exacerbate apnea, but IT ABSOLUTELY DOES NOT CAUSE IT. That's absurd."

My sleep doctor is suuuuper fit, and very lean. An avid runner. He said that he has a VERY bad case of sleep apnea. I was floored!

He said you either have it or you don't.

I've heard different from sleep doctors, that is, it can be bad luck from genetics where weight is not the main (or even not at all) a factor, but for others it's largely caused by fat deposits blocking the upper airway, and with weight loss it entirely goes away.

So case by case?

I had a doctor in the sleep clinic tell me if I lost 10KG my sleep apnea would be cured. I lost 15KG and my prescription went up 5%. When the doctors treating you believe that nonsense and then are surprised it did not work there isn't much hope for the public. This myth actually comes from the doctors.

Weight loss is not curative, but it is a useful. About 2/3rds to 3/4ths of people with obstructive sleep apnoea are obese.

https://cks.nice.org.uk/topics/obstructive-sleep-apnoea-synd...

> These recommendations are based on the Scottish Intercollegiate Guidelines Network (SIGN) guideline Management of obstructive sleep apnoea/hypopnoea syndrome (OSAHS) in adults [SIGN, 2003].

> Advice on weight loss and exercise

> Expert opinion in a clinical review article from the British Medical Journal, Obstructive sleep apnoea, concluded that weight reduction programmes are not to be thought of as curative but rather as adjunctive for people with obstructive sleep apnoea syndrome (OSAS) [Greenstone and Hack, 2014].

> A meta-analysis of 5 small studies (n = 129) found a reduction in the apnoea/hypopnoea index (AHI) by –6.27 events/hour following supervised exercise training. This demonstrated a reduction in the severity of sleep apnoea (with minimal changes in body weight) with exercise [Iftikhar et al, 2014].

Spouse has a threshold weight. Above she snores like a train. I sleep elsewhere.

Below she’s fine.

Yes they are, because sleep apnea causes obesity since lack of sleep messes enormously with your hormones. Its not causative its correlated, it is a symptom.

I had poor sleep for ages and was never overweight, which is true of most insomniacs I imagine. Sleep apnea may facilitate obesity but it doesn't cause it. It's calories in, calories out.

I think the strong correlation of obesity with sleep apnea however should lend credence to the idea that it at least exacerbates it. But more to the point, there are conditions that are very similar to sleep apnea but are misdiagnosed as such. And these may very well be more related to weight.

Exercise can help fix excessive body fat, which contributed to my apnea.

It’s actually pretty fascinating how many common and sometimes serious medical problems are known to be fixable with “woo-woo” advice like “don’t eat like shit” (advice that 95% of people don’t follow). E.g. type 2 diabetes and refractory epilepsy now have purely dietary interventions as front-line treatments. We have weak evidence that this will probably work for many other common diseases. But just 10 years ago you would probably have been accused of “woo-woo” for making this claim about epilepsy or diabetes.

And perhaps this is a thing everyone deals with to some extent for one thing or another: I have a very strictly controlled diet. It's the result of a lot of testing, and discussions with my doctors.

Most people that are around me enough get a sense of this. Most don't know the depth of it.

What gets old is when I deviate from the diet, by say having a glass of beer at a social function, it's a big deal. Everyone's concerned about me, which I appreciate, but I have to justify the beer by pointing out how it fits into my diet, and how I've planned for this beer. I have had to pull up my diet plan on more than one occasion to make someone happy.

If I was known to have problems adhering to my diet, and asked for this sort of help, then fine. I don't have that, and I've tried to tell people that I know what my diet is. I try to be nice about it, and ask people to just let me be.

Instead I get to defend every beer I have. So, now I'm the teetotaler in the office. It's just easier than the alternative. But it's damned annoying.

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/

Just so you know, you're effectively complaining that people care about you too much. People can't put themselves in your shoes, but they try, and when they see you having a beer, knowing it could be bad for you, they try to support you in keeping away from it.

I can see how it would get annoying. If you view it as love, instead of nagging, it might get a little less annoying.

It's virtue signaling, not caring. It's pretending to care and expecting to get pats on the head for it while actually being a burden to someone whose life is already overburdened.

It's the opposite of actually caring about a person. It's caring about them making you feel good about going through superficial "caring" motions while doing absolutely no good and lots of terrible harm when it is added up over time for the person with a chronic condition whom absolutely everyone wants pats on the head from for pretending to care while doing not a damn thing to actually make their life better in some meaningful way.

If people care, they do what actually helps you rather than insisting you make them feel good for superficial bullshit that only adds to your suffering.

Within a range, you get to interpret the actions of others. It's like one of those optical illusions where you can see a rabbit or a duck, but not both at the same time. One of those illusions will anger you and sap your strength. The other will connect you with another human being on some level, however superficial, which is wired to make you feel happy and fulfilled. Neither is the full vision of truth. But you are free to choose the lens through which you view the world.

The ironic thing is that the original complainant is making this exact same point about those who give this advice. Typically they're not trying to connect - they're trying to fulfill their own needs without understanding the other's needs.

None of us fully understand each other's needs. You can get frustrated about that, or educate others. It's a personal choice. I don't judge anyone either way (or at least, I agree they are free to make their own decisions), but having done both, I certainly have my own observations about which of those leads more effectively to happiness.

> If people care, they do what actually helps you rather than insisting you make them feel good for superficial bullshit that only adds to your suffering.

This is a very simplistic way to look at people. A lot of people are misinformed or not thoughtful or don't fully understand your experience or frankly not that bright. The idea that people who genuinely care never do any damage is beyond ludicrous.

That's a ludicrous interpretation of my remark.

People who actually care will be okay with being told "This isn't helping. Please just stop." But that's not what the vast majority of people do.

The vast majority of people want it acknowledged that they are good people because they care about you and are trying to help and all this shit.

If they cared, they would drop it when asked instead of doubling down on trying to demand that you make them feel like a good person for fucking with your life and trampling your boundaries.

I also have a serious condition. No, most people absolutely do not actually care about my welfare.

I have tons of firsthand experience with this and I'm not budging one inch.

I find it’s often due to people getting frustrated and not knowing his deal with it in an emotionally helpful way.

See it in kids constantly, adults often.

Kids getting mad at the cat for not liking being dressed in doll clothes.

Yes you care about the cat. However now everyone including the cat is unhappy.

Childish behavior, except it still hurts when loved ones get mad at you for not recovering fast enough.

Parents offered me some pills (blood thinners) that might solve some problems.

They got very upset when I refused without a doctors consent.

Only thing I wanted from them was emotional support. Instead I had go cut them off for a year.

All because they couldn’t fix me.

Based on other comments, I was under the impression that some people wanted zero unsolicited feedback. This instead sounds like you don't want people to keep offering suggestions after you tell them to stop. The former would make for a really cold society. The latter is completely understandable. I would tell the repeat offenders to fuck right off.

Support groups are a good place. Lots of forums dedicated to most chronic conditions. Much safer to ask advice in those places.

That’s not “caring about you too much”. It’s not knowing what’s appropriate.

As someone who had to follow a strict diet for a while, I know for a fact that the people who stuck their nose into my allowed indulgences did not care about me nearly as much as the people who actually cared and knew I was capable of managing my own diet.

If you meet an overweight person, do you begin conversation by telling them to eat less? If not, why don't you? They obviously get too much calories and may benefit from your advice. And they can always tell you to stop giving them advice if they don't like it.

Seriously, some people have no common sense and/or are just arrogant. Jumping into a situation where you have minimal information and assuming to know best is the hallmark of a fool.

How is it that you know that for a fact?

Edit: Please don't downvote a clear question. The truth is, you can't know another's intentions in most cases. It's very possible parent does know them in these cases for other circumstantial reasons. In which case I'd ask, how do you know that extrapolated to everyone else who asks those same questions?

> Just so you know, you're effectively complaining that people care about you too much

I'm sure someone cares, but the majority of such folks? Nope.

I was once watching a crappy move, but it had one gem in it. The protagonist had lost the use of his leg in the Civil war, and he sought compensation for it, and received a lot easier than expected. Throughout the movie, he keeps wondering why it was so easy to get the money - he expected a fight. Towards the end, the revelation hit. They didn't pay him because they cared about him. They did it because they wanted to feel better about themselves. They did it so that they could walk away feeling tall.

And so it is with most advice: They do it because it makes them feel like they've done a good deed, and who knows - someone may even benefit from it? If they didn't, then no harm done.

That last sentence is quite wrong, though.

After hearing this, I got fairly good at figuring out who is trying to help vs who is trying to walk away tall. A little extra engagement with the person can usually reveal this.

I've learned from enough experience - both in giving and in receiving advice - that when you try to help someone, you should take on the burden on yourself. It becomes your responsibility to understand the pain points of the other person, know what he's tried, etc. This is exactly what random advice typically isn't. It's well known that saying "I had a similar problem" and talking about it is not empathizing[1]

One of the worst jobs I had involved a very knowledgeable person who would try to give advice whenever I was stuck. His advice often didn't work because he didn't understand the problem well, and made assumptions, etc. Every time he tried to help it was a huge time sink - to the point that I would mention my problems only when he wasn't around. Not exactly analogous to this situation, except to point out that this person never really understood the burden of helping someone. When you help someone, work with the person till the problem is resolved (or till you can't help). He failed as a teammate because of this.

(For those who recognize the movie - yes, I am taking liberties).

[1] Seriously - this is standard advice you'll find everywhere: When someone tells you their problems, do not respond with how similar your problems were - took me years to understand why.

I know exactly what you mean. This one time, I was talking with this guy and he wouldn't stop going on and on... Just kidding :)

I really like this story. It's definitely a tell when somebody only wants to help when it's easy and gives up right away. Although, that can also be a factor of them realizing that helping is beyond their ability, which can be different from not caring.

I think maybe a better tell is, how much time do they spend asking questions, versus giving "advice". Listening is nice but not always impactful. Talking is cheap and often irrelevant. But a good question can change your entire worldview. Or better yet, make you change your own worldview.

Did your coworker help everyone in this way, or was it just you?

In that case it is modern medicine that is woo-woo since we had dietary treatments for serval things before we had medications for it, like for epilepsy.

Yes, excessive body fat is known to cause sleep apnea. It's not the only cause.

I had to go through jaw surgery. It was worth it.

Neither exercise nor meditation worked for me, but very intense throat exercises alleviated the condition. I also took up singing. Now, I daily follow a 5 minute intense throat exercise before going to beg until my neck and throat aches. Only then I hit the pillow.

People suffering from sleep apnea seem to have bad throat muscles and big tongues.

Sounds right to me.

Also if I’m in a flare, those items will swell noticeably

Would you mind sharing the excersises that helped?

The most helpful one is making the top of your tongue meet the roof of your mouth and pulling it backward as far as you are able. Simultaneously move your jaw down forcing it as much down as possible slowly, while not losing roof-tongue contact.

Hold the stretch, repeat the same for a couple of minutes and your muscles will ache. This also unclogs your sinus, so don't be surprised if you need to swallow or clear your nose. Also, don't do the full stretch at the first try. Warm up a bit first.

There are several others, but take too much time to describe here. You can research online. This is not obscure information. My doctor gave me a writeup. Please note they take a few days to take effect. Personally, I found them effective within a week, but YMMV.

Singing also helps - less effective but more fun (well, for you, if not others who will wince).

I am interested in researching it online, but what search terms should I use? I've never heard of this before. Thank you.

sleep apnea exercises. Additionally, sinus clear exercises will help if your nose is blocked.

https://www.sleepfoundation.org/articles/mouth-exercises-to-... https://www.cpap.com/blog/exercises-alleviate-sleep-apnea/ https://www.southfloridasinusandallergy.com/14-convenient-ex...

I had it too. I finally got double jaw surgery. And changed to sleeping on my side.

In my case I had to tell people because I was quitting my job to have the procedure done. Some opinions from people in the healthcare field (nurses, etc) said I didn't need surgery because I wasn't overweight or old. Well they weren't maxillofacial surgeons.

Counter-point: the number of people with a sleep disorder who are determined to try every folk remedy they can get their hands on before seeing an actual doctor