Earlier quoted context omitted.
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 hea…
I'm less dangerous if I know nothing, but duly noted about how unwelcome medical advice can be
How to deal with extreme physical pain
251–260 of 362 posts
Re: How to deal with extreme physical pain
#252I 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…
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.
Re: How to deal with extreme physical pain
#253Re: How to deal with extreme physical pain
#254I 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…
> 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.
People suffering from sleep apnea seem to have bad throat muscles and big tongues.
Re: How to deal with extreme physical pain
#255Re: How to deal with extreme physical pain
#256Earlier quoted context omitted.
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,…
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.
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].
Re: How to deal with extreme physical pain
#257Earlier quoted context omitted.
I'm less dangerous if I know nothing, but duly noted about how unwelcome medical advice can be
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.
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.
Re: How to deal with extreme physical pain
#258A few years ago I fell and broke my elbow. It was a mess and had to have emergency surgery to put it all back together. After surgery I'm sent home with a "ball" around my neck that is a reservoir for some pain meds that are being fed into my body via a catheter that was threaded into a vein in my neck. So I am sitting on my recliner a few hours after the surgery , awake but groggy. Anesthesiologist calls me on my ce…
Re: How to deal with extreme physical pain
#259I 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…
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…
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.
Re: How to deal with extreme physical pain
#260I 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…
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 e…
Went through massive medical problems. Zero support from doctors fo years.
I had to go into trail and error mode for years to start figuring out what was wrong, and what effected me.
All with an Exhaustion and pain level on par with a dying cancer patient. Oh and a comet brain fog.
Eventually found answers, several conditions that were inter-related. Uncommon response to most drugs the doctors tried.
If I hadn’t gone through this trial and error approach, I would not have lived through it all.