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I have a chronic condition that causes pain. One of the things I've learned, in as much as I can, is I don't tell anyone. I'd rather be rude than explain I'm

I have a chronic condition that causes pain. One of the things I've learned, in as much as I can, is I don't tell anyone. I'd rather be rude than explain I'm in pain. Not because I don't appreciate sympathy. Not because I'm ashamed. It's because I don't want your advice on how to make the pain go away or to deal with it. I'm tired of advice. I've got too much advice. I try things, I research issues. I talk to doctors. What your Aunt did that had a similar case to me 30 years ago to get better isn't interesting, it's an anecdote. I'm tired of hearing of woo remedies. If you have research, fine, I'll read it. One day. Maybe months from now. I am not your guinea pig. I am not going to change my treatment regimen based off your advice tomorrow. Sorry, had to get that off my chest. It's tiring. More so than the pain sometimes.

strstr 6y ago
Good luck. I hope things take a turn for the better.
CobaltFire 6y ago
Just want to voice my support. I deal with that too, and it’s almost as tiring as the pain some days.
gwbas1c 6y ago
> It's because I don't want your advice on how to make the pain go away or to deal with it Banana_giraffe isn't alone. I had chronic obstructive sleep apnea and I quickly got tired of unsolicited woo-woo illogical suggestions to treat it. Exercise and meditation doesn't fix problems with bone structure.
- Retric 6y ago
  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.
  - treeman79 6y ago
    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.
    - failrate 6y ago
      I have a similar exercise intolerance, could you enlighten me to what the underlying problem was?
      - treeman79 6y ago
        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.
        failrate 6y ago
        Thank you for sharing. I'm currently pursuing a POTS evaluation.
        treeman79 6y ago
        Welcome. Had POTs quite bad. Spinal tap gave a year of relief. Now I use Diamox. Huge improvement
    - DrAwdeOccarim 6y ago
      My spouse has something similar, do you mind sharing what the underlying problem was?
- centimeter 6y ago
  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.
  - banana_giraffe 6y ago
    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.
    - centimeter 6y ago
      If your diet plan allows beer it’s probably not very effective. Doctors aren’t going to be very helpful here - 95% are incompetent. You should probably try to come up with a good and efficiently computable a priori dietary strategy (e.g. evolutionary ancestral diet, with the goal of minimizing the chance of running into defective metabolic pathways). I can’t think of any such strategies I’m aware of that would allow beer.
      - 6y ago
- diob 6y ago
  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.
- peteretep 6y ago
  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
- akulbe 6y ago
  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.
  - JauntyHatAngle 6y ago
    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?
  - PaulKeeble 6y ago
    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.
    - DanBC 6y ago
      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-syndrome/management/management/ 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].
- cko 6y ago
  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.
- lenkite 6y ago
  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.
  - treeman79 6y ago
    Sounds right to me. Also if I’m in a flare, those items will swell noticeably
  - thking 6y ago
    Would you mind sharing the excersises that helped?
    - lenkite 6y ago
      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).
      - meowster 6y ago
        I am interested in researching it online, but what search terms should I use? I've never heard of this before. Thank you.
        6y ago
Waterluvian 6y ago
What would you hope people do if you did tell them? My guess is "Damn that sounds awful. Let me know if I can help" and then dropping it entirely?
- softwaredoug 6y ago
  From my own chronic health issues, I think I just want pain to be seen and appreciated. Understand I need space/time to work on it. And whatever appropriate accommodations to be able to do my job.
- banana_giraffe 6y ago
  Pretty much. If you want to talk to me about what my symptoms are, and what I do to treat it, fine, I'm happy to discuss things most of the time, with the understanding that it's me telling you about my life experience, nothing more. I know I'm coming off rude here, but the truth is, I don't want your advice on how to fix things, or worse, your advice that it's not as bad as I think it is, and that I can do whatever activity that I know will cause me problems tomorrow.
  - rootusrootus 6y ago
    > I know I'm coming off rude here On the contrary, this is excellent advice! I know I feel a tendency to want to share my knowledge with friends and family because I think it may help. I should know better, because I do not like being given advice, and yet I have a lot of trouble avoiding giving it myself. When I try, I am accused of being aloof or uninterested. A hard line to walk, keeping my mouth shut is enough work all by itself ;-)
    - deleted 6y ago
      [deleted]
  - Waterluvian 6y ago
    You're really not coming off as rude at all. It's actually helpful. The bottom line is that I want to be supportive. And if I don't know how, I might make a guess at it and that guess might be the natural response of "try to help fix their problem." It makes sense that you just don't want to hear that. I can empathize avec depression. Just listen to me and be patient with me. You can't fix this and it's kind of insulting that you try, as if I was too dumb to think up your idea. (This also relates to software reviews too: I've spent a week on this problem. You suggesting I'm doing it wrong after five minutes of review can be really insulting)
giantg2 6y ago
I have to admit, one of my thoughts was 'Is there anything I can recommend'.
- banana_giraffe 6y ago
  I get that. I'm like that too. If I see a problem, I want desperately to try and help fix it. This has absolutely taught me that sometimes the best answer is "Wow, that really sucks. If you want to talk about it, let me know" and move on to some other subject.
  - giantg2 6y ago
    Yep. I try to be respectful by not suggesting common stuff since they would have already looked into. Sometimes I'll suggest looking into some less common things. There are many things that modern doctors won't suggest or don't know about. For example, I'm an amateur mycologist and I have heard about health benefits of different mushrooms. If they don't want hear about the health aspect, the way I bring it up usually opens the door to a topic change about foraging for mushrooms, eating them, and many related questions. In this case, I don't know of anything that would help frozen shoulder. There is some stuff that I find interesting to talk about but don't think it is worth suggesting to him. Like some studies on pain management that I barely remember, but I don't know if it was on psilocybin or maybe LSD. The way my dumbed-down brain remembers it is that it basically causes a pain "reset" where in some cases the brain ignores the persistent pain signals, or lowers the perceived pain level. There is also grayanotoxin that comes from tincture of ghost pipes that alters how pain is perceived, but I think that is only temporary. Interesting thing is that ghost pipes are actually a plant that doesn't contain any chlorophyll, but feed off of the roots of other plants, somewhat similar to some mychorrizal fungi.
    - headstorm 6y ago
      Plants such as ghost pipes (saprophytes) can be found in abundance, along with rhododendrons, along the Elbo Creek trail in the Olympic mountains of Washington state. https://www.wta.org/go-hiking/hikes/elbo-creek https://www.wta.org/go-hiking/hikes/elbo-creek
renewiltord 6y ago
Ah, people are just trying to relate and help. I get that it's frustrating, though.
- ianai 6y ago
  Care by simply expressing someone wasn’t in pain is enough. No need to try to be the fixer.
  - renewiltord 6y ago
    Right, right. Just explaining. Not justifying.
    - ianai 6y ago
      And it’s not always wrong to try to help like that. But just want to give people another option.
notabee 6y ago
I am very, very familiar with this exact feeling. Hopefully at least those who are close to you understand this a little better and support in better ways.
ky3 6y ago
Sorry to hear this. Mind if I offer a meta-woo remedy? There are communities out there who value deep and non-judgmental listening. They recognize that it can be an act of aggression to offer unwanted advice. They have a healthy interest in others and know when to yield when it's really not their business to know. If you could find such a community, you might feel better. You might feel understood.
- banana_giraffe 6y ago
  Honestly, thanks for that. The last community I joined ended poorly when I didn't, err, react well to the advice that I try going to church more. I do need to work on my mental health side, and a community is a good way. I'll dig into that.
- DoreenMichele 6y ago
  Most online support groups for medical conditions are terrible. I know a few principles that are constructive, but I don't know how to get traction with starting a community where people genuinely talk about useful information in a genuinely supportive fashion that's not invasive. I'm agreeing with you, if that isn't apparent. This is a topic near and dear to my heart and I keep trying to figure it out and ...failing. My Reddit has five members and no traffic, basically. I am stilling thinking on how one would position and promote such a thing. (Edited for accuracy.)
  - PaulKeeble 6y ago
    I think /r/cfs is a relatively good model and works fairly well and its counterpart forum phoenixrising also has similar qualities. They both have both been going through some growing pains of late with all the covid patients developing the condition but the rules and moderation is working well so far. /r/covidlonghaulers on the other hand is busy working out how to exclude various people and becoming pretty hostile and I think shows one of the ways definitely not to do this.
    - DoreenMichele 6y ago
bigmattystyles 6y ago
While we're getting things off chests. I have a condition that's barely a condition; it causes minor, barely pain but it's always there. The problem for me is I am also pre-disposed to catastrophizing and that makes everything worse. My problem is as much (if not more) mental as it is physical. I've received help on both ends (for physical and mental health) but eight months of living with this discomfort and I can't help but think that it's forever, will never go away and in fact will get worse. I fear that the physical activities I love will disappear from life and that I won't be able to play with my kids. Perhaps it's nothing more than future snakeoil but claims that humans will be able to CRISPR pain signals away in the not too distant future gives me hope. Opiates scare the living sh*t out of me. I love Scott, I've followed and read him for a long time. From his involvement in the diabetes community and his glucose tracking projects, to advocating for .NET and MS, and just opening doors for others, it's clear he's a wonderful person. From his posts, he's got an amazing family and I wish him and them all the best.
sterlind 6y ago
I'm in a fair bit of constant pain from Ehlers-Danlos syndrome, and what's helped me is finding support groups of the "life hacks" variety. Everyone in the group has EDS or is a caretaker, so they "get" it. It's consent-oriented because people won't give you advice unless you post asking for it. It doesn't turn into a pity party because the forum is about asking questions and getting answers. The post history has everything from wheelchair tips to relocating joints. Direct medical advice is banned, only suggestions of what to ask doctors are allowed. It's nice. Sometimes I really want somewhere I can scream into the void about my pain and degeneration though. I'm not sure of a psychologically-healthy way to scratch that itch.
- s5300 6y ago
  EDS outright fucking sucks. I have EDS and Thoracic Outlet Syndrome likely caused by it. Also being treated for a recurring visualizable CSF leak. Literally have to drive 3+ hours/fly for the majority of my major treatments so far.
  - sterlind 6y ago
    Yup, I have TOS too. It's not too painful for me, but prevents me from lifting my arms for more than a minute or so. So far I've avoided most of the other common complications besides POTS and nerve stuff, and I've been managing okay with lots of PT and bracing. Hang in there, I hope they can patch your leak!
    - s5300 6y ago
      Just in case you're not aware, a pretty cool dude named Dr. Ian Carroll has been finding that a fairly substantial amount of POTS cases in EDS end up being a CSF leak, even though sometimes quite miniscule and very hard to identify. Not to say that POTS and EDS aren't a thing though. Very much is. I was initially thought to just be suffering from POTS by some pretty well respected docs at Cleveland Clinic, but there were some outlying symptoms that just didn't add up. Ended up getting to see Dr. Carroll at Stanford and Dr. Wouter Schievink at Cedars-Sinai and they were able to visualize a leak, still in the process of trying to get blood/glue injections to work until I get through TOS surgery. After that it may end up coming to surgery for CSF as well. Also, I hate to sound pessimistic but just want to try to give advice - from what I've heard anecdotally, TOS will slowly progress, especially in those with EDS. The younger you have surgery, the better the outcome as well. I tried to stick it out with some pretty seriously targeted physical therapy and bracing until I was 20 but shit just kinda hit the fan and I've had to opt for surgery. There are 5-10 surgeons in the U.S. that are at the point of having really great outcomes, most notably Dr. Dean Donahue at MGH. I waited like 9 months to initially consult with him. As much as I loathe Facebook, here are some great groups with regards to knowledge of good surgeons if you ever decide to pursue that route. A bad surgeon for TOS is definitely a bit of a death sentence. https://m.facebook.com/groups/15231937182 https://m.facebook.com/groups/15231937182 https://m.facebook.com/groups/205345126171314 https://m.facebook.com/groups/205345126171314 P.S., apparently there's been a good amount of POTS cases induced by COVID-19 and not responding well to treatment. Doctor at Cleveland Clinic mentioned it to me, said they were a bit dumbfounded. Will definitely be interesting to see how things play out long-term, will hopefully end up giving POTS some more awareness it deserves. Also, I have great hope in Neuralink for EDS pain in the future. Hopefully.
forgotmypw17 6y ago
I think you're being unnecessarily dismissive of good, reliable information coming your way. Anecdotal advice is some of the most reliable, trustworthy advice that we come across. All those studies are affected by agendas from dozens of individuals and organizations, not to mention potentially poor procedure and general incompetence. You're being gifted information which was transported to you graciously from an actual human being who maybe actually had your problem and found something useful to help with it. I think if I were you, I would reconsider how you view these situations.
- 6stringmerc 6y ago
  The only way to fix my ankle arthritis is to have the joint replaced, which is not ideal nor a consideration. Anything otherwise is not good, nor reliable information. It's kind of like me saying to you, "Hey, your advice is stupid, maybe you should go take some smart pills so you don't infect others" in seriousness, instead of as an off-hand reply gifting you with information graciously.
  - forgotmypw17 6y ago
    (With the disclaimer that I still think that unsolicited medical advice is kind of rude.) If someone is giving you advice which worked for an unrelated condition, you're still ignoring useful information which may help someone you know if you actually bother to pay attention and remember it. If someone is giving you advice for the same condition you have been diagnosed, you're taking information from authority figures (licensed doctors) over information from someone who is actually in the same boat as you, which seems foolish to me. Certainly un-hacker-like. By the way, if you look at actual studies, results of surgery done for pain are not very encouraging -- less than half result in pain actually going away.
    - kortex 6y ago
      Signal to noise, mate. This isn't like chat with coworkers over lunch, "have you taken thermal expansion of the turboencabulator into account?" where there's a high potential for novelty. Nay, 90% of these comments are: Did you try (increasing exercise/water intake/sleep/just not sucking)? How about (decreasing gluten/carbs/aspartame/"toxins"/bogons)? it's just low-hanging fruit.
6stringmerc 6y ago
I occasionally limp due to a chronic condition. The last thing I want is any comments about it, because a few days later I might not. Unsolicited commentary is usually met with a sigh and a brush off, not telling the truth. The truth is I have built up defense mechanisms and anybody trying to point out my weaknesses can get a face full of their own by way of training watching Triumph the Insult Comic Dog. "Mind your own business" is something that could use a little more respect now and then.
- StavrosK 6y ago
  This is rather off topic, but your post reminded me of it. In Uni, there was a professor who had a very pronounced limp. Whenever I saw him around, it was the only thing about him I'd notice. In the 3rd year, we had a class with him. After the second lecture, I had so gotten accustomed to him that if you had asked me who the professor with the limp was, I would have honestly replied that I didn't know any professors like that. The fact that I had gotten to talk to him and see him teachn so I knew more about him than justn "has a limp" probably played a part. I guess I have no point to make with this anecdote, take from it what you will.
- noir_lord 6y ago
  Hello member of "limps occasionally" club. For me it's syringomyelia which sometimes makes it extremely painful to put my foot down (best I can describe it is that feeling of hyper sensitivity you get after pins and needles where you don't want to move/touch your foot) but it's so variable that some days I walk normally, some days with a limp - I normally just tell people who notice that I sprained my ankle because it's easier than explaining what a syrinx is and that there isn't any cure beyond medication.
eric_b 6y ago
At the risk of being a jerk: Have you read the book The Mindbody Prescription by Dr. Sarno? [1] I sound like an infomercial pitchman but that book changed my life. I had a massive structural issue that was either going mean a knee replacement or dealing with "you won't walk right ever again". Well, it turns out there was a third option. [1] https://www.amazon.com/dp/B00FOTRPJQ/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1 https://www.amazon.com/dp/B00FOTRPJQ/ref=dp-kindle-redirect?... It sounds woo, I know. I was so fucking tired of people giving me their quack advice too. This was the one thing that made sense. And it literally changed my life.
- headstorm 6y ago
  I was completely ready for that book to change my life after reading so many glowing testimonials. It did nothing, though I felt worse after reading it a few times, because it was supposed to be so transformative. I guess the mind-body prescription isn't prescribed for celiac disease or my other health issues, because finding out that I had those conditions was the key, not Dr. Sarno's advice.
  - kranner 6y ago
    Sarno's book didn't help me either. I wasn't even sure what the point was, until I watched a documentary called "All the Rage" (available on Amazon Prime in the US) on Sarno and his method, which at least clarified the whole thing for me. One of the things Sarno advises before taking him on is that every other medical condition that could possibly be relevant has been investigated and ruled out.
sigzero 6y ago
I am exactly the same way. When people ask, I just say "I'm doing ok." and that is usually the end of the asking.
ternaryoperator 6y ago
Re the reactions to your pain, I think there is a belief deeply embedded in the American psyche that most any problem can be solved. And mentioning a difficult problem brings out this aspect. In almost all cases, I like this quality and the underlying optimism it implies, but I also understand how it can be annoying and often come across as unconsciously insensitive. Sometimes, expressions of sympathy are all that's needed or wanted.
- draw_down 6y ago
  I don’t think the root of it is what you’re describing. It’s just plain old fear of death. If your pain can be fixed, it means you aren’t at risk of just keeling over dead one day. Except that’s exactly what will happen. And in all such matters, “you” means me, “for whom the bell tolls”-style.
maxbond 6y ago
I'd just like to say that, while I see people responding in exactly the way you and gwbas1c are describing, and trying to turn the criticism back around on you, you have made me think about my actions in the past and the way I express concern, and what sort of boundaries I should have with people. Reading about your experience, and seeing it happen in real time, has been extremely educational for me. I hope it is heartening to know that you've inspired a self awareness in at least one person with this thread. Thank you for taking the time.
- ludamad 6y ago
  I'm less dangerous if I know nothing, but duly noted about how unwelcome medical advice can be
  - ignoramous 6y ago
    I always appreciate advice (or any input, really) when it comes from someone with experience or wisdom regardless of whether they are a medical professional.
    - loceng 6y ago
      Indoctrination is real when it comes to medical professions, there are major pitfalls with the current system including regulatory capture by for-profit interests, e.g. the medical industrial-institutional complex. I've learned the vast majority of what I've needed to heal not through the mainstream medical system - and more often than not there's disbelief, skepticism, or false narratives they react with simply because they didn't learn it through their narrow specialized path, being selected primarily for their memorization skills and not critical thinking and reasoning skills.
    - DoreenMichele 6y ago
      This is maybe not completely clear, but one of the issues is that if you have a serious condition, you may know more than most doctors do about the condition. I mean you may know more about it than general practitioners and you will only have some hope of learning more from a doctor if you see a specialist. So you have buckets and buckets of info and you run into well-meaning people who want to feel helpful and they toss out some random snippet of an idea without even really talking with you. It would be sort of like if you walked into a doctor's office and said "I have x condition" and they replied "Do you want X antibiotic?" without taking a history of finding out what your current complaint is. And it becomes about their emotional needs. Even if they are sincere, it's exhausting to try to explain. It's like if you go to a cocktail party and you spend the entire evening repeating your entire medical history to everyone you meet to satisfy their curiosity and you never get one minute to actually enjoy the party and socialize a little. So you eventually just don't want to talk to people casually about it at all. Because it is one hundred percent downside for you. There is a long-shot scenario in which maybe you will meet someone who actually knows something useful and is actually sensitive about how they talk with you about it and it's mostly not worth leaving that door open in hopes of connecting with that one rare person once in a great while because the rest of the time it is such a huge burden on your already limited time and energy that you are better off just betting that "This person cannot help me. Moving on. Yeesh." So while I welcome sincere interest in my various problems, no, some random person who knows nothing of my background and just wants to get their jollies feeling "helpful" for five minutes isn't really going to enhance my life at all. It is all downside and I mostly want to avoid having certain topics come up.
verisimilidude 6y ago
Thank you for saying this. I've experienced the same thing. Like you, I seldom mention my chronic pain as a result. You're right, it's exhausting. I try to remind myself that it's more about the other person's insecurities than my own pain, and I try to be gracious. Sometimes I still snap at people who don't take the hint.
m3kw9 6y ago
The main thread is that people that tell you about their pains just want you to hear them, not solve their problems. They want empathy by being a good listener and just acknowledge with empathy
- DoreenMichele 6y ago
  When I tell people I'm in pain (or similar), I'm usually trying to convey "Hey, sorry I am not at my best. I'm not trying to be rude. I'm not trying to bark at you. If I'm failing to get all the info, it's not for lack of trying or being too lazy or disrespectful to pay attention. I'm just doing the best I can right now and the best I can isn't that great." And that's usually not how it gets interpreted so I do a lot less of that than I used to do.
zachrip 6y ago
People do the same stuff with my vision loss. I have usher's syndrome, it's not curable right now but everyone has some answer for me. Of course I don't want to go blind, so yes, I have researched options and studies, thank you.
QuadrupleA 6y ago
Hear, hear! Well put. That goes for small things like colds, too, which despite science everyone seems to have a cure for.
wutbrodo 6y ago
Oh man, this was the case for my (former) sleep disorder. I appreciate the suggestions, but trust me, if you'd heard of it, it's something I'd tried a few years ago.
eslaught 6y ago
I was rereading The Lord of the Rings a while back and one of the things that struck me was how seriously the characters take the giving of advice. In retrospect I think this is one of the biggest blind spots of American culture in general. We act like advice is cheap or even free, both in the giving and in receiving. It's not. Even when solicited. I think we'd all be healthier if we were slower to give advice, even outside of such extreme circumstances.
- treeman79 6y ago
  Advice gets old after awhile. Someone finds out you suffer migraines, “oh drink some water!” Also chronic conditions tend to have cycles of weeks to months. People get tired of dealing with you much faster. So you learn to hide your symptoms as best possible.
  - htnsao 6y ago
    > “oh drink some water!” Works for me. Headaches without. I often wake up a few times each night to drink water to get rid of dehydration headaches. And I carry water with me all the time, thirst all day, headaches when it runs out. (like yesterday). Worse in the desert. One guy I worked with suffers from extreme debilitating migraines and only drinks about 1/4 of the amount of liquids that I find necessary to avoid headaches. (which is about ~3-4 litres/day). I would tell him if I did the same I'd have major headaches too. But no, he doesn't want to hear it, says water doesn't work. Too dumb perhaps. Actually I can feel a slight headache now so will go drink some more water to get rid if it. If it hurt more I'd reach for 400mg of ibuprofen or two and, of course, more water.
- travbrack 6y ago
  I didn't notice this on my recent read. Can you think of an example?
  - fhars 6y ago
    Three is Company: "Is it indeed?" laughed Gildor. "Elves seldom give unguarded advice, for advice is a dangerous gift, even from the wise to the wise, and all counsels may run ill." The Mirror of Galadriel: "Do you advise me to look?" asked Frodo. "No," she said. "I do not counsel you one way or the other. I am not a counselor. [...] Do as you will."
deleted 6y ago
[deleted]
dfsegoat 6y ago
Jordan Peterson talks about this: Trying to help someone, when you aren’t in any real professional position to, is a good way to put both people in a very dark place.
rdiddly 6y ago
Too bad for those of us who weren't gonna say that stuff and just end up wondering forever why you were rude.
knuthsat 6y ago
What I found was that people cannot relate to individuals with chronic pain or illness. If the person talks about it most will interpret that as complaining or having negative view on life. It’s quite hard for me to watch as my loved ones get rejected by people in their environment if they sometimes mention their pain. My advice is always to just not talk about it. I feel like most people today just don’t have the capacity to be emphatic, instead they give advice and get hurt when the advice isn’t accepted, accusing you of being negative and not accepting “help”.
francis-li 6y ago
That sounds really frustrating and I think you've encapsulated what people who have these chronic conditions are feeling quite well. It seems like when people with pain decide to share what they're going through, they aren't looking for solutions -- they just want people to know what's happening and that their experience in that moment is affected by it, and they want you to understand that. I think this mindset is especially hard for people with a technical background to grasp because they are natural problem solvers and they will immediately switch to problem solving mode. Instead of trying to solve the problem (which is not what the other person needs), they'll be able to connect better with the other person by empathising with them, validating what they are feeling and deferring to them for what to do next.
- Vinnl 6y ago
  I wonder if it would help (bit nervous about this comment because it looks like giving advice, and I haven't had the frustration myself) to explicitly preface the sharing with an explicit request not to give advice? I have been on the other end of that: when the father of a friend of mine passed away they explicitly said they did not want sympathy but instead to do something fun that night, and we did. Years later I still remember that because it felt somewhat as an eye-opener that people can just be that candid.
  - francis-li 6y ago
    I think it would probably help, it'd probably require that person to be pretty in touch with their needs (which seems like it could be pretty hard when you're already super frustrated and in pain). It sounds like your friend was in touch enough to let you know how to help them and it sounds like you really connected that night. I wish people were more candid in general, but maybe people are a bit scared to ask for what they want?
    - Vinnl 6y ago
      Yes absolutely, and that is very difficult, but since the people in this thread were already articulating their needs, it looks like they have already acquired that skill? (Of course, actually articulating those needs on the spot is yet another skill, so it's still easier said than done, but it might be worth focusing one's learning efforts on.)
bollu 6y ago
How ought one respond? I struggle with responding to challenges outside of offering "problem solving" solutions, or sympathetic noises. What would /actually help/?
- throwaway_pdp09 6y ago
  It's different for different people, so the answer is, find out what the other person wants and give that. In my case, give me nothing, no sympathy, no opportunities to talk, no anything. I deal with stuff by not thinking about it, tuning it out. If someone tries to 'help' with suggestions, they're forcing me think about it and the huge chunk of my life I've lost to it. That hurts deeply. So, find out first. If someone wants to talk they will, if not, don't bring it up. Generally speaking, don't offer fucking stupid suggestions ("have you seen a doctor?"). Don't tell me repeatedly doing X is the right thing to do when I know it will make things worse (happens rarely but is very annoying). Don't offer me psychic healing, or offer to pray for me (unless you've found that that person is open to that. I am not and it will infuriate me). HTH!
question000 6y ago
Yeah I'm in the same situation and I just started lying to everyone and obtaining treatment illegally, buying prescriptions online and treating myself based on what I've read instead of waiting 6 months for a 15 minute appointment with a neurologist who not even going to look at my medical history. While I'm no closer to being out of pain, I'm getting treatment at a pace and quality I find appropriate and not getting bogged down being prescribed several subtle variations of the same type of medication. I literally had years of being prescribed different types of SSRIs for "mood" when my real problem is dystonia. My doctor, a specialist, finally revealed she's not "allowed" by the insurance company to prescribe the anti-Parkinson drugs that I can easily buy with bitcoin. I don't I know you don't want advice, but my advice is fuck it you may not be a doctor but you only live once.
JohnBooty 6y ago
One of the things I've learned, in as much as I can, is I don't tell anyone. I'd rather be rude than explain I'm in pain I learned this lesson with ADHD as well. Most people will roll their eyes and think it's a simple lack of discipline. The rest give you advice, which is even worse. I learned to communicate my needs to people, instead of my diagnosis. Example: "I have trouble focusing on my work in crowded areas - could I work in [some other location] when I'm not pairing?" instead of "I can't work here, I have ADHD." (Not that I ever put it that way, but you know what I mean) But pain is a different story. I don't know how you would even explain that to people without getting all of the unwanted and unhelpful advice...
noir_lord 6y ago
When my Chrohn's flares I just want to be left alone. I don't need your advice on something you don't understand and can't comprehend, just let me do me. Work has no idea that I even have Chrohn's because it doesn't affect my job performance and I cover it well. Peoples perceptions of you change when they know you have a long term chronic condition and it isn't always a positive change - I don't think it's conscious but it does happen so to avoid it, I just don't tell people.
jks 6y ago
I know the feeling. The most annoying discussions in my experience go something like this: "Why aren't you coming to the company party?" "Because that would likely exacerbate my chronic headache and I might be unable to work for several days." "Oh wow, is it that bad? Have you tried acupuncture? My cousin had a headache and that really helped..." And a few minutes later: "Come on, the party will be fun, how bad could it be?" I've learned to manage my condition well enough that people generally don't notice any problems. I've probably tried any remedies you can come up with, and so far the best way to cope is to live a boring life and go to bed at the same time every night after a peaceful evening. But because I'm not writhing in pain during the conversation, some people seem to think that I'm just coming up with excuses to not come to their party or whatever they are asking me to do.
talonx 6y ago
I can empathize. I have had doctors mock and scoff at my RSI related pains, and people who don't understand computer usage-related injuries give me all sorts of well-meaning advice. I've stopped going to docs and listening to such people, and instead focused on overall strengthening. This strategy is mostly based on what kind folks at HN have shared in various threads as having worked for their RSI, and suffice to say, it has helped (not cured) much more than any other advice. As a former marathon runner, I tend to stick to the adage "listen to your own body" along with medical advice.
grumple 6y ago
I hear you on not wanting the advice of others. I've also heard the flip side - where people had lived with pain for so long then somebody (my partner is a physical therapist) tells them something or teaches them something that changes their life and they wish they'd pursued it sooner.
srean 6y ago
I understand because I have been on both sides of this. Unless people are really pushy and persistent about their advice I take it as well-meaning empathy -- one of the few redeeming qualities of human beings. Otherwise, to the advice giver, it comes across as being shouted and yelled at when all you did is hold the door for a person.
loceng 6y ago
Do you mind sharing what diagnosis/labels you've been given as possible or confirmed causes? Do you know or suspect any specific cause(s)? Edit to add: asking a question, if they're willing to answer - they don't have to, in case someone might know of a treatment or research they're not aware of yet, warrants being asked - unless we as a society want to be weak, shy, disengaged, and isolated in our suffering.
- rattray 6y ago
  That sounds like the sort of question which OP may consider exhausting. And frankly I don't think the answer would add to the discussion. There exists many chronic conditions which cause pain.
  - loceng 6y ago
    No, they said people offering unsolicited advice is exhausting. Them posting in a thread about pain, along with saying they’ll read research if people have it - even “If you have research, fine, I'll read it. One day. Maybe months from now.” - says they are open to it. You have no idea if them answering would add to the discussion - quite arrogant of you. Not sure why you’re coddling. My asking questions isn't the same as offering unsolicited advice.
slothtrop 6y ago
It's human nature. People like to offer solutions, particularly if they frequently see a loved one vent. Venting isn't free. So like you, I learned to stop sharing my pain in most cases.
zackees 6y ago
This is terrible advice. I ended three decades of migraines by following advice that they were triggered by food allergies to gluten and corn.
wtracy 6y ago
Since so many posters can't seem to wrap their heads around what banana_giraffe is saying, let me try to put it in terms you can all understand: Imagine you go to a cocktail party, tell someone that you're a software developer, and they immediately tell you that you should "do blockchain". The next morning, you talk to your neighbor on the way out, mention that you work for a tech company, and they say "You should try this Rails thing!" "You mean Ruby on Rails?" "Oh, you've heard of it?" Now imagine having variations of this conversation every single day, only it's about the intimate details of your personal life. You wouldn't give career advice to a fellow developer without at least taking a moment to understand where they are in their career, or what their specialization is. Good advice for a junior developer writing WordPress plugins is not good advice for a mid-career embedded systems engineer, which is not good advice for a senior machine learning specialist. Don't give advice to strangers about chronic medical conditions without first taking a few minutes to learn about their situation. If you're not comfortable asking about how long they've had the condition and what remedies they've already tried, then you're in no position to offer advice. It should go without saying that if the person doesn't want to discuss the details of their condition, then they don't want advice. Context matters, people.
giardini 6y ago
You are at the borders of accepted medical science and facing the woods now, having exhausted the usually-accepted and documented approaches. You have two choices: a) turn your back on the woods and return back to the usually-accepted and documented approaches and try them and their variations again or b) continue in the unexplored woods. For (b) to work you must try everything you hear. But you say you have chosen NOT to hear. If you want to live in ignorance and pain, by all means, help yourself. But if you continue into the woods, it is the "Auntie" remedy, the anecdotal, the accidental personal discovery that will finally help you. IOW you have no choice: open up and listen to the "woo remedies" for there is nothing else for you, having exhausted what is "known". And when you find the remedy, no one will hear you speak of it, since it will be "anecdotal". "There are more things in Heaven and Earth, Horatio, than are dreamt of in your philosophy.' - William Shakespeare
- banana_giraffe 6y ago
  Ok, I've been disconnected from this discussion for a while, but I can't pass this comment by. > But you say you have chosen NOT to hear. If you want to live in ignorance and pain, by all means, help yourself. I do not want to live in pain. I continue to try things. I've lived with this condition longer than you might guess, and I have a few lifetimes of things left to try. I know some things that will help, so I do that for now, but I have no end of things to try in the future. Stop assuming you know what's in my backlog. Stop assuming you know I've given up. It's all just tiring. If I had a lack of ideas, I'd ask for help. If my doctors aren't helping, I'd fire them, I have fired doctors that don't help me. And I'm not opposed to firing all doctors and finding other sources, but for now the doctors are doing good for me, and the provide avenues that aren't available via other means. For now, they're helping, they're communicating with me, and working with me as I test things. I hope to one day get to the point of no pain at all, but I also need to be able to get to a place of managing the pain I do have, since it's possible, indeed probable with my condition, that that's the best I can hope for. And in case it's not clear, I'm not exactly speaking directly to you. I'm speaking to the mythical person conglomerate that you fall into of people that talk to me like this. So many people seem to assume they know more about my condition with so much less information, including cases like this with basically no information. Please stop assuming you know more about my condition than me.

strstr 6y ago

Good luck. I hope things take a turn for the better.

CobaltFire 6y ago

Just want to voice my support. I deal with that too, and it’s almost as tiring as the pain some days.

gwbas1c 6y ago

> It's because I don't want your advice on how to make the pain go away or to deal with it Banana_giraffe isn't alone. I had chronic obstructive sleep apnea and I quickly got tired of unsolicited woo-woo illogical suggestions to treat it. Exercise and meditation doesn't fix problems with bone structure.

Retric 6y ago
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.
- treeman79 6y ago
  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.
  - failrate 6y ago
    I have a similar exercise intolerance, could you enlighten me to what the underlying problem was?
    - treeman79 6y ago
      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.
      - failrate 6y ago
        Thank you for sharing. I'm currently pursuing a POTS evaluation.
        treeman79 6y ago
        Welcome. Had POTs quite bad. Spinal tap gave a year of relief. Now I use Diamox. Huge improvement
  - DrAwdeOccarim 6y ago
    My spouse has something similar, do you mind sharing what the underlying problem was?
centimeter 6y ago
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.
- banana_giraffe 6y ago
  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.
  - centimeter 6y ago
    If your diet plan allows beer it’s probably not very effective. Doctors aren’t going to be very helpful here - 95% are incompetent. You should probably try to come up with a good and efficiently computable a priori dietary strategy (e.g. evolutionary ancestral diet, with the goal of minimizing the chance of running into defective metabolic pathways). I can’t think of any such strategies I’m aware of that would allow beer.
    - 6y ago
diob 6y ago
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.
peteretep 6y ago
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
akulbe 6y ago
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.
- JauntyHatAngle 6y ago
  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?
- PaulKeeble 6y ago
  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.
  - DanBC 6y ago
    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-syndrome/management/management/ 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].
cko 6y ago
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.
lenkite 6y ago
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.
- treeman79 6y ago
  Sounds right to me. Also if I’m in a flare, those items will swell noticeably
- thking 6y ago
  Would you mind sharing the excersises that helped?
  - lenkite 6y ago
    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).
    - meowster 6y ago
      I am interested in researching it online, but what search terms should I use? I've never heard of this before. Thank you.
      - 6y ago

Waterluvian 6y ago

What would you hope people do if you did tell them? My guess is "Damn that sounds awful. Let me know if I can help" and then dropping it entirely?

softwaredoug 6y ago
From my own chronic health issues, I think I just want pain to be seen and appreciated. Understand I need space/time to work on it. And whatever appropriate accommodations to be able to do my job.
banana_giraffe 6y ago
Pretty much. If you want to talk to me about what my symptoms are, and what I do to treat it, fine, I'm happy to discuss things most of the time, with the understanding that it's me telling you about my life experience, nothing more. I know I'm coming off rude here, but the truth is, I don't want your advice on how to fix things, or worse, your advice that it's not as bad as I think it is, and that I can do whatever activity that I know will cause me problems tomorrow.
- rootusrootus 6y ago
  > I know I'm coming off rude here On the contrary, this is excellent advice! I know I feel a tendency to want to share my knowledge with friends and family because I think it may help. I should know better, because I do not like being given advice, and yet I have a lot of trouble avoiding giving it myself. When I try, I am accused of being aloof or uninterested. A hard line to walk, keeping my mouth shut is enough work all by itself ;-)
  - deleted 6y ago
    [deleted]
- Waterluvian 6y ago
  You're really not coming off as rude at all. It's actually helpful. The bottom line is that I want to be supportive. And if I don't know how, I might make a guess at it and that guess might be the natural response of "try to help fix their problem." It makes sense that you just don't want to hear that. I can empathize avec depression. Just listen to me and be patient with me. You can't fix this and it's kind of insulting that you try, as if I was too dumb to think up your idea. (This also relates to software reviews too: I've spent a week on this problem. You suggesting I'm doing it wrong after five minutes of review can be really insulting)

giantg2 6y ago

I have to admit, one of my thoughts was 'Is there anything I can recommend'.

banana_giraffe 6y ago
I get that. I'm like that too. If I see a problem, I want desperately to try and help fix it. This has absolutely taught me that sometimes the best answer is "Wow, that really sucks. If you want to talk about it, let me know" and move on to some other subject.
- giantg2 6y ago
  Yep. I try to be respectful by not suggesting common stuff since they would have already looked into. Sometimes I'll suggest looking into some less common things. There are many things that modern doctors won't suggest or don't know about. For example, I'm an amateur mycologist and I have heard about health benefits of different mushrooms. If they don't want hear about the health aspect, the way I bring it up usually opens the door to a topic change about foraging for mushrooms, eating them, and many related questions. In this case, I don't know of anything that would help frozen shoulder. There is some stuff that I find interesting to talk about but don't think it is worth suggesting to him. Like some studies on pain management that I barely remember, but I don't know if it was on psilocybin or maybe LSD. The way my dumbed-down brain remembers it is that it basically causes a pain "reset" where in some cases the brain ignores the persistent pain signals, or lowers the perceived pain level. There is also grayanotoxin that comes from tincture of ghost pipes that alters how pain is perceived, but I think that is only temporary. Interesting thing is that ghost pipes are actually a plant that doesn't contain any chlorophyll, but feed off of the roots of other plants, somewhat similar to some mychorrizal fungi.
  - headstorm 6y ago
    Plants such as ghost pipes (saprophytes) can be found in abundance, along with rhododendrons, along the Elbo Creek trail in the Olympic mountains of Washington state. https://www.wta.org/go-hiking/hikes/elbo-creek https://www.wta.org/go-hiking/hikes/elbo-creek

renewiltord 6y ago

Ah, people are just trying to relate and help. I get that it's frustrating, though.

ianai 6y ago
Care by simply expressing someone wasn’t in pain is enough. No need to try to be the fixer.
- renewiltord 6y ago
  Right, right. Just explaining. Not justifying.
  - ianai 6y ago
    And it’s not always wrong to try to help like that. But just want to give people another option.

notabee 6y ago

I am very, very familiar with this exact feeling. Hopefully at least those who are close to you understand this a little better and support in better ways.

ky3 6y ago

Sorry to hear this. Mind if I offer a meta-woo remedy? There are communities out there who value deep and non-judgmental listening. They recognize that it can be an act of aggression to offer unwanted advice. They have a healthy interest in others and know when to yield when it's really not their business to know. If you could find such a community, you might feel better. You might feel understood.

banana_giraffe 6y ago
Honestly, thanks for that. The last community I joined ended poorly when I didn't, err, react well to the advice that I try going to church more. I do need to work on my mental health side, and a community is a good way. I'll dig into that.
DoreenMichele 6y ago
Most online support groups for medical conditions are terrible. I know a few principles that are constructive, but I don't know how to get traction with starting a community where people genuinely talk about useful information in a genuinely supportive fashion that's not invasive. I'm agreeing with you, if that isn't apparent. This is a topic near and dear to my heart and I keep trying to figure it out and ...failing. My Reddit has five members and no traffic, basically. I am stilling thinking on how one would position and promote such a thing. (Edited for accuracy.)
- PaulKeeble 6y ago
  I think /r/cfs is a relatively good model and works fairly well and its counterpart forum phoenixrising also has similar qualities. They both have both been going through some growing pains of late with all the covid patients developing the condition but the rules and moderation is working well so far. /r/covidlonghaulers on the other hand is busy working out how to exclude various people and becoming pretty hostile and I think shows one of the ways definitely not to do this.
  - DoreenMichele 6y ago

bigmattystyles 6y ago

While we're getting things off chests. I have a condition that's barely a condition; it causes minor, barely pain but it's always there. The problem for me is I am also pre-disposed to catastrophizing and that makes everything worse. My problem is as much (if not more) mental as it is physical. I've received help on both ends (for physical and mental health) but eight months of living with this discomfort and I can't help but think that it's forever, will never go away and in fact will get worse. I fear that the physical activities I love will disappear from life and that I won't be able to play with my kids. Perhaps it's nothing more than future snakeoil but claims that humans will be able to CRISPR pain signals away in the not too distant future gives me hope. Opiates scare the living sh*t out of me. I love Scott, I've followed and read him for a long time. From his involvement in the diabetes community and his glucose tracking projects, to advocating for .NET and MS, and just opening doors for others, it's clear he's a wonderful person. From his posts, he's got an amazing family and I wish him and them all the best.

sterlind 6y ago

I'm in a fair bit of constant pain from Ehlers-Danlos syndrome, and what's helped me is finding support groups of the "life hacks" variety. Everyone in the group has EDS or is a caretaker, so they "get" it. It's consent-oriented because people won't give you advice unless you post asking for it. It doesn't turn into a pity party because the forum is about asking questions and getting answers. The post history has everything from wheelchair tips to relocating joints. Direct medical advice is banned, only suggestions of what to ask doctors are allowed. It's nice. Sometimes I really want somewhere I can scream into the void about my pain and degeneration though. I'm not sure of a psychologically-healthy way to scratch that itch.

s5300 6y ago
EDS outright fucking sucks. I have EDS and Thoracic Outlet Syndrome likely caused by it. Also being treated for a recurring visualizable CSF leak. Literally have to drive 3+ hours/fly for the majority of my major treatments so far.
- sterlind 6y ago
  Yup, I have TOS too. It's not too painful for me, but prevents me from lifting my arms for more than a minute or so. So far I've avoided most of the other common complications besides POTS and nerve stuff, and I've been managing okay with lots of PT and bracing. Hang in there, I hope they can patch your leak!
  - s5300 6y ago
    Just in case you're not aware, a pretty cool dude named Dr. Ian Carroll has been finding that a fairly substantial amount of POTS cases in EDS end up being a CSF leak, even though sometimes quite miniscule and very hard to identify. Not to say that POTS and EDS aren't a thing though. Very much is. I was initially thought to just be suffering from POTS by some pretty well respected docs at Cleveland Clinic, but there were some outlying symptoms that just didn't add up. Ended up getting to see Dr. Carroll at Stanford and Dr. Wouter Schievink at Cedars-Sinai and they were able to visualize a leak, still in the process of trying to get blood/glue injections to work until I get through TOS surgery. After that it may end up coming to surgery for CSF as well. Also, I hate to sound pessimistic but just want to try to give advice - from what I've heard anecdotally, TOS will slowly progress, especially in those with EDS. The younger you have surgery, the better the outcome as well. I tried to stick it out with some pretty seriously targeted physical therapy and bracing until I was 20 but shit just kinda hit the fan and I've had to opt for surgery. There are 5-10 surgeons in the U.S. that are at the point of having really great outcomes, most notably Dr. Dean Donahue at MGH. I waited like 9 months to initially consult with him. As much as I loathe Facebook, here are some great groups with regards to knowledge of good surgeons if you ever decide to pursue that route. A bad surgeon for TOS is definitely a bit of a death sentence. https://m.facebook.com/groups/15231937182 https://m.facebook.com/groups/15231937182 https://m.facebook.com/groups/205345126171314 https://m.facebook.com/groups/205345126171314 P.S., apparently there's been a good amount of POTS cases induced by COVID-19 and not responding well to treatment. Doctor at Cleveland Clinic mentioned it to me, said they were a bit dumbfounded. Will definitely be interesting to see how things play out long-term, will hopefully end up giving POTS some more awareness it deserves. Also, I have great hope in Neuralink for EDS pain in the future. Hopefully.

forgotmypw17 6y ago

I think you're being unnecessarily dismissive of good, reliable information coming your way. Anecdotal advice is some of the most reliable, trustworthy advice that we come across. All those studies are affected by agendas from dozens of individuals and organizations, not to mention potentially poor procedure and general incompetence. You're being gifted information which was transported to you graciously from an actual human being who maybe actually had your problem and found something useful to help with it. I think if I were you, I would reconsider how you view these situations.

6stringmerc 6y ago
The only way to fix my ankle arthritis is to have the joint replaced, which is not ideal nor a consideration. Anything otherwise is not good, nor reliable information. It's kind of like me saying to you, "Hey, your advice is stupid, maybe you should go take some smart pills so you don't infect others" in seriousness, instead of as an off-hand reply gifting you with information graciously.
- forgotmypw17 6y ago
  (With the disclaimer that I still think that unsolicited medical advice is kind of rude.) If someone is giving you advice which worked for an unrelated condition, you're still ignoring useful information which may help someone you know if you actually bother to pay attention and remember it. If someone is giving you advice for the same condition you have been diagnosed, you're taking information from authority figures (licensed doctors) over information from someone who is actually in the same boat as you, which seems foolish to me. Certainly un-hacker-like. By the way, if you look at actual studies, results of surgery done for pain are not very encouraging -- less than half result in pain actually going away.
  - kortex 6y ago
    Signal to noise, mate. This isn't like chat with coworkers over lunch, "have you taken thermal expansion of the turboencabulator into account?" where there's a high potential for novelty. Nay, 90% of these comments are: Did you try (increasing exercise/water intake/sleep/just not sucking)? How about (decreasing gluten/carbs/aspartame/"toxins"/bogons)? it's just low-hanging fruit.

6stringmerc 6y ago

I occasionally limp due to a chronic condition. The last thing I want is any comments about it, because a few days later I might not. Unsolicited commentary is usually met with a sigh and a brush off, not telling the truth. The truth is I have built up defense mechanisms and anybody trying to point out my weaknesses can get a face full of their own by way of training watching Triumph the Insult Comic Dog. "Mind your own business" is something that could use a little more respect now and then.

StavrosK 6y ago
This is rather off topic, but your post reminded me of it. In Uni, there was a professor who had a very pronounced limp. Whenever I saw him around, it was the only thing about him I'd notice. In the 3rd year, we had a class with him. After the second lecture, I had so gotten accustomed to him that if you had asked me who the professor with the limp was, I would have honestly replied that I didn't know any professors like that. The fact that I had gotten to talk to him and see him teachn so I knew more about him than justn "has a limp" probably played a part. I guess I have no point to make with this anecdote, take from it what you will.
noir_lord 6y ago
Hello member of "limps occasionally" club. For me it's syringomyelia which sometimes makes it extremely painful to put my foot down (best I can describe it is that feeling of hyper sensitivity you get after pins and needles where you don't want to move/touch your foot) but it's so variable that some days I walk normally, some days with a limp - I normally just tell people who notice that I sprained my ankle because it's easier than explaining what a syrinx is and that there isn't any cure beyond medication.

eric_b 6y ago

At the risk of being a jerk: Have you read the book The Mindbody Prescription by Dr. Sarno? [1] I sound like an infomercial pitchman but that book changed my life. I had a massive structural issue that was either going mean a knee replacement or dealing with "you won't walk right ever again". Well, it turns out there was a third option. [1] https://www.amazon.com/dp/B00FOTRPJQ/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1 https://www.amazon.com/dp/B00FOTRPJQ/ref=dp-kindle-redirect?... It sounds woo, I know. I was so fucking tired of people giving me their quack advice too. This was the one thing that made sense. And it literally changed my life.

headstorm 6y ago
I was completely ready for that book to change my life after reading so many glowing testimonials. It did nothing, though I felt worse after reading it a few times, because it was supposed to be so transformative. I guess the mind-body prescription isn't prescribed for celiac disease or my other health issues, because finding out that I had those conditions was the key, not Dr. Sarno's advice.
- kranner 6y ago
  Sarno's book didn't help me either. I wasn't even sure what the point was, until I watched a documentary called "All the Rage" (available on Amazon Prime in the US) on Sarno and his method, which at least clarified the whole thing for me. One of the things Sarno advises before taking him on is that every other medical condition that could possibly be relevant has been investigated and ruled out.

sigzero 6y ago

I am exactly the same way. When people ask, I just say "I'm doing ok." and that is usually the end of the asking.

ternaryoperator 6y ago

Re the reactions to your pain, I think there is a belief deeply embedded in the American psyche that most any problem can be solved. And mentioning a difficult problem brings out this aspect. In almost all cases, I like this quality and the underlying optimism it implies, but I also understand how it can be annoying and often come across as unconsciously insensitive. Sometimes, expressions of sympathy are all that's needed or wanted.

draw_down 6y ago
I don’t think the root of it is what you’re describing. It’s just plain old fear of death. If your pain can be fixed, it means you aren’t at risk of just keeling over dead one day. Except that’s exactly what will happen. And in all such matters, “you” means me, “for whom the bell tolls”-style.

maxbond 6y ago

I'd just like to say that, while I see people responding in exactly the way you and gwbas1c are describing, and trying to turn the criticism back around on you, you have made me think about my actions in the past and the way I express concern, and what sort of boundaries I should have with people. Reading about your experience, and seeing it happen in real time, has been extremely educational for me. I hope it is heartening to know that you've inspired a self awareness in at least one person with this thread. Thank you for taking the time.

ludamad 6y ago
I'm less dangerous if I know nothing, but duly noted about how unwelcome medical advice can be
- ignoramous 6y ago
  I always appreciate advice (or any input, really) when it comes from someone with experience or wisdom regardless of whether they are a medical professional.
  - loceng 6y ago
    Indoctrination is real when it comes to medical professions, there are major pitfalls with the current system including regulatory capture by for-profit interests, e.g. the medical industrial-institutional complex. I've learned the vast majority of what I've needed to heal not through the mainstream medical system - and more often than not there's disbelief, skepticism, or false narratives they react with simply because they didn't learn it through their narrow specialized path, being selected primarily for their memorization skills and not critical thinking and reasoning skills.
  - DoreenMichele 6y ago
    This is maybe not completely clear, but one of the issues is that if you have a serious condition, you may know more than most doctors do about the condition. I mean you may know more about it than general practitioners and you will only have some hope of learning more from a doctor if you see a specialist. So you have buckets and buckets of info and you run into well-meaning people who want to feel helpful and they toss out some random snippet of an idea without even really talking with you. It would be sort of like if you walked into a doctor's office and said "I have x condition" and they replied "Do you want X antibiotic?" without taking a history of finding out what your current complaint is. And it becomes about their emotional needs. Even if they are sincere, it's exhausting to try to explain. It's like if you go to a cocktail party and you spend the entire evening repeating your entire medical history to everyone you meet to satisfy their curiosity and you never get one minute to actually enjoy the party and socialize a little. So you eventually just don't want to talk to people casually about it at all. Because it is one hundred percent downside for you. There is a long-shot scenario in which maybe you will meet someone who actually knows something useful and is actually sensitive about how they talk with you about it and it's mostly not worth leaving that door open in hopes of connecting with that one rare person once in a great while because the rest of the time it is such a huge burden on your already limited time and energy that you are better off just betting that "This person cannot help me. Moving on. Yeesh." So while I welcome sincere interest in my various problems, no, some random person who knows nothing of my background and just wants to get their jollies feeling "helpful" for five minutes isn't really going to enhance my life at all. It is all downside and I mostly want to avoid having certain topics come up.

verisimilidude 6y ago

Thank you for saying this. I've experienced the same thing. Like you, I seldom mention my chronic pain as a result. You're right, it's exhausting. I try to remind myself that it's more about the other person's insecurities than my own pain, and I try to be gracious. Sometimes I still snap at people who don't take the hint.

m3kw9 6y ago

The main thread is that people that tell you about their pains just want you to hear them, not solve their problems. They want empathy by being a good listener and just acknowledge with empathy

DoreenMichele 6y ago
When I tell people I'm in pain (or similar), I'm usually trying to convey "Hey, sorry I am not at my best. I'm not trying to be rude. I'm not trying to bark at you. If I'm failing to get all the info, it's not for lack of trying or being too lazy or disrespectful to pay attention. I'm just doing the best I can right now and the best I can isn't that great." And that's usually not how it gets interpreted so I do a lot less of that than I used to do.

zachrip 6y ago

People do the same stuff with my vision loss. I have usher's syndrome, it's not curable right now but everyone has some answer for me. Of course I don't want to go blind, so yes, I have researched options and studies, thank you.

QuadrupleA 6y ago

Hear, hear! Well put. That goes for small things like colds, too, which despite science everyone seems to have a cure for.

wutbrodo 6y ago

Oh man, this was the case for my (former) sleep disorder. I appreciate the suggestions, but trust me, if you'd heard of it, it's something I'd tried a few years ago.

eslaught 6y ago

I was rereading The Lord of the Rings a while back and one of the things that struck me was how seriously the characters take the giving of advice. In retrospect I think this is one of the biggest blind spots of American culture in general. We act like advice is cheap or even free, both in the giving and in receiving. It's not. Even when solicited. I think we'd all be healthier if we were slower to give advice, even outside of such extreme circumstances.

treeman79 6y ago
Advice gets old after awhile. Someone finds out you suffer migraines, “oh drink some water!” Also chronic conditions tend to have cycles of weeks to months. People get tired of dealing with you much faster. So you learn to hide your symptoms as best possible.
- htnsao 6y ago
  > “oh drink some water!” Works for me. Headaches without. I often wake up a few times each night to drink water to get rid of dehydration headaches. And I carry water with me all the time, thirst all day, headaches when it runs out. (like yesterday). Worse in the desert. One guy I worked with suffers from extreme debilitating migraines and only drinks about 1/4 of the amount of liquids that I find necessary to avoid headaches. (which is about ~3-4 litres/day). I would tell him if I did the same I'd have major headaches too. But no, he doesn't want to hear it, says water doesn't work. Too dumb perhaps. Actually I can feel a slight headache now so will go drink some more water to get rid if it. If it hurt more I'd reach for 400mg of ibuprofen or two and, of course, more water.
travbrack 6y ago
I didn't notice this on my recent read. Can you think of an example?
- fhars 6y ago
  Three is Company: "Is it indeed?" laughed Gildor. "Elves seldom give unguarded advice, for advice is a dangerous gift, even from the wise to the wise, and all counsels may run ill." The Mirror of Galadriel: "Do you advise me to look?" asked Frodo. "No," she said. "I do not counsel you one way or the other. I am not a counselor. [...] Do as you will."

deleted 6y ago

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dfsegoat 6y ago

Jordan Peterson talks about this: Trying to help someone, when you aren’t in any real professional position to, is a good way to put both people in a very dark place.

rdiddly 6y ago

Too bad for those of us who weren't gonna say that stuff and just end up wondering forever why you were rude.

knuthsat 6y ago

What I found was that people cannot relate to individuals with chronic pain or illness. If the person talks about it most will interpret that as complaining or having negative view on life. It’s quite hard for me to watch as my loved ones get rejected by people in their environment if they sometimes mention their pain. My advice is always to just not talk about it. I feel like most people today just don’t have the capacity to be emphatic, instead they give advice and get hurt when the advice isn’t accepted, accusing you of being negative and not accepting “help”.

francis-li 6y ago

That sounds really frustrating and I think you've encapsulated what people who have these chronic conditions are feeling quite well. It seems like when people with pain decide to share what they're going through, they aren't looking for solutions -- they just want people to know what's happening and that their experience in that moment is affected by it, and they want you to understand that. I think this mindset is especially hard for people with a technical background to grasp because they are natural problem solvers and they will immediately switch to problem solving mode. Instead of trying to solve the problem (which is not what the other person needs), they'll be able to connect better with the other person by empathising with them, validating what they are feeling and deferring to them for what to do next.

Vinnl 6y ago
I wonder if it would help (bit nervous about this comment because it looks like giving advice, and I haven't had the frustration myself) to explicitly preface the sharing with an explicit request not to give advice? I have been on the other end of that: when the father of a friend of mine passed away they explicitly said they did not want sympathy but instead to do something fun that night, and we did. Years later I still remember that because it felt somewhat as an eye-opener that people can just be that candid.
- francis-li 6y ago
  I think it would probably help, it'd probably require that person to be pretty in touch with their needs (which seems like it could be pretty hard when you're already super frustrated and in pain). It sounds like your friend was in touch enough to let you know how to help them and it sounds like you really connected that night. I wish people were more candid in general, but maybe people are a bit scared to ask for what they want?
  - Vinnl 6y ago
    Yes absolutely, and that is very difficult, but since the people in this thread were already articulating their needs, it looks like they have already acquired that skill? (Of course, actually articulating those needs on the spot is yet another skill, so it's still easier said than done, but it might be worth focusing one's learning efforts on.)

bollu 6y ago

How ought one respond? I struggle with responding to challenges outside of offering "problem solving" solutions, or sympathetic noises. What would /actually help/?

throwaway_pdp09 6y ago
It's different for different people, so the answer is, find out what the other person wants and give that. In my case, give me nothing, no sympathy, no opportunities to talk, no anything. I deal with stuff by not thinking about it, tuning it out. If someone tries to 'help' with suggestions, they're forcing me think about it and the huge chunk of my life I've lost to it. That hurts deeply. So, find out first. If someone wants to talk they will, if not, don't bring it up. Generally speaking, don't offer fucking stupid suggestions ("have you seen a doctor?"). Don't tell me repeatedly doing X is the right thing to do when I know it will make things worse (happens rarely but is very annoying). Don't offer me psychic healing, or offer to pray for me (unless you've found that that person is open to that. I am not and it will infuriate me). HTH!

question000 6y ago

Yeah I'm in the same situation and I just started lying to everyone and obtaining treatment illegally, buying prescriptions online and treating myself based on what I've read instead of waiting 6 months for a 15 minute appointment with a neurologist who not even going to look at my medical history. While I'm no closer to being out of pain, I'm getting treatment at a pace and quality I find appropriate and not getting bogged down being prescribed several subtle variations of the same type of medication. I literally had years of being prescribed different types of SSRIs for "mood" when my real problem is dystonia. My doctor, a specialist, finally revealed she's not "allowed" by the insurance company to prescribe the anti-Parkinson drugs that I can easily buy with bitcoin. I don't I know you don't want advice, but my advice is fuck it you may not be a doctor but you only live once.

JohnBooty 6y ago

One of the things I've learned, in as much as I can, is I don't tell anyone. I'd rather be rude than explain I'm in pain I learned this lesson with ADHD as well. Most people will roll their eyes and think it's a simple lack of discipline. The rest give you advice, which is even worse. I learned to communicate my needs to people, instead of my diagnosis. Example: "I have trouble focusing on my work in crowded areas - could I work in [some other location] when I'm not pairing?" instead of "I can't work here, I have ADHD." (Not that I ever put it that way, but you know what I mean) But pain is a different story. I don't know how you would even explain that to people without getting all of the unwanted and unhelpful advice...

noir_lord 6y ago

When my Chrohn's flares I just want to be left alone. I don't need your advice on something you don't understand and can't comprehend, just let me do me. Work has no idea that I even have Chrohn's because it doesn't affect my job performance and I cover it well. Peoples perceptions of you change when they know you have a long term chronic condition and it isn't always a positive change - I don't think it's conscious but it does happen so to avoid it, I just don't tell people.

jks 6y ago

I know the feeling. The most annoying discussions in my experience go something like this: "Why aren't you coming to the company party?" "Because that would likely exacerbate my chronic headache and I might be unable to work for several days." "Oh wow, is it that bad? Have you tried acupuncture? My cousin had a headache and that really helped..." And a few minutes later: "Come on, the party will be fun, how bad could it be?" I've learned to manage my condition well enough that people generally don't notice any problems. I've probably tried any remedies you can come up with, and so far the best way to cope is to live a boring life and go to bed at the same time every night after a peaceful evening. But because I'm not writhing in pain during the conversation, some people seem to think that I'm just coming up with excuses to not come to their party or whatever they are asking me to do.

talonx 6y ago

I can empathize. I have had doctors mock and scoff at my RSI related pains, and people who don't understand computer usage-related injuries give me all sorts of well-meaning advice. I've stopped going to docs and listening to such people, and instead focused on overall strengthening. This strategy is mostly based on what kind folks at HN have shared in various threads as having worked for their RSI, and suffice to say, it has helped (not cured) much more than any other advice. As a former marathon runner, I tend to stick to the adage "listen to your own body" along with medical advice.

grumple 6y ago

I hear you on not wanting the advice of others. I've also heard the flip side - where people had lived with pain for so long then somebody (my partner is a physical therapist) tells them something or teaches them something that changes their life and they wish they'd pursued it sooner.

srean 6y ago

I understand because I have been on both sides of this. Unless people are really pushy and persistent about their advice I take it as well-meaning empathy -- one of the few redeeming qualities of human beings. Otherwise, to the advice giver, it comes across as being shouted and yelled at when all you did is hold the door for a person.

loceng 6y ago

Do you mind sharing what diagnosis/labels you've been given as possible or confirmed causes? Do you know or suspect any specific cause(s)? Edit to add: asking a question, if they're willing to answer - they don't have to, in case someone might know of a treatment or research they're not aware of yet, warrants being asked - unless we as a society want to be weak, shy, disengaged, and isolated in our suffering.

rattray 6y ago
That sounds like the sort of question which OP may consider exhausting. And frankly I don't think the answer would add to the discussion. There exists many chronic conditions which cause pain.
- loceng 6y ago
  No, they said people offering unsolicited advice is exhausting. Them posting in a thread about pain, along with saying they’ll read research if people have it - even “If you have research, fine, I'll read it. One day. Maybe months from now.” - says they are open to it. You have no idea if them answering would add to the discussion - quite arrogant of you. Not sure why you’re coddling. My asking questions isn't the same as offering unsolicited advice.

slothtrop 6y ago

It's human nature. People like to offer solutions, particularly if they frequently see a loved one vent. Venting isn't free. So like you, I learned to stop sharing my pain in most cases.

zackees 6y ago

This is terrible advice. I ended three decades of migraines by following advice that they were triggered by food allergies to gluten and corn.

wtracy 6y ago

Since so many posters can't seem to wrap their heads around what banana_giraffe is saying, let me try to put it in terms you can all understand: Imagine you go to a cocktail party, tell someone that you're a software developer, and they immediately tell you that you should "do blockchain". The next morning, you talk to your neighbor on the way out, mention that you work for a tech company, and they say "You should try this Rails thing!" "You mean Ruby on Rails?" "Oh, you've heard of it?" Now imagine having variations of this conversation every single day, only it's about the intimate details of your personal life. You wouldn't give career advice to a fellow developer without at least taking a moment to understand where they are in their career, or what their specialization is. Good advice for a junior developer writing WordPress plugins is not good advice for a mid-career embedded systems engineer, which is not good advice for a senior machine learning specialist. Don't give advice to strangers about chronic medical conditions without first taking a few minutes to learn about their situation. If you're not comfortable asking about how long they've had the condition and what remedies they've already tried, then you're in no position to offer advice. It should go without saying that if the person doesn't want to discuss the details of their condition, then they don't want advice. Context matters, people.

giardini 6y ago

You are at the borders of accepted medical science and facing the woods now, having exhausted the usually-accepted and documented approaches. You have two choices: a) turn your back on the woods and return back to the usually-accepted and documented approaches and try them and their variations again or b) continue in the unexplored woods. For (b) to work you must try everything you hear. But you say you have chosen NOT to hear. If you want to live in ignorance and pain, by all means, help yourself. But if you continue into the woods, it is the "Auntie" remedy, the anecdotal, the accidental personal discovery that will finally help you. IOW you have no choice: open up and listen to the "woo remedies" for there is nothing else for you, having exhausted what is "known". And when you find the remedy, no one will hear you speak of it, since it will be "anecdotal". "There are more things in Heaven and Earth, Horatio, than are dreamt of in your philosophy.' - William Shakespeare

banana_giraffe 6y ago
Ok, I've been disconnected from this discussion for a while, but I can't pass this comment by. > But you say you have chosen NOT to hear. If you want to live in ignorance and pain, by all means, help yourself. I do not want to live in pain. I continue to try things. I've lived with this condition longer than you might guess, and I have a few lifetimes of things left to try. I know some things that will help, so I do that for now, but I have no end of things to try in the future. Stop assuming you know what's in my backlog. Stop assuming you know I've given up. It's all just tiring. If I had a lack of ideas, I'd ask for help. If my doctors aren't helping, I'd fire them, I have fired doctors that don't help me. And I'm not opposed to firing all doctors and finding other sources, but for now the doctors are doing good for me, and the provide avenues that aren't available via other means. For now, they're helping, they're communicating with me, and working with me as I test things. I hope to one day get to the point of no pain at all, but I also need to be able to get to a place of managing the pain I do have, since it's possible, indeed probable with my condition, that that's the best I can hope for. And in case it's not clear, I'm not exactly speaking directly to you. I'm speaking to the mythical person conglomerate that you fall into of people that talk to me like this. So many people seem to assume they know more about my condition with so much less information, including cases like this with basically no information. Please stop assuming you know more about my condition than me.