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Things I Wish I’d Known Before My Chronic Illness (nytimes.com)
39 points by metaphysics 28 days ago | hide | past | web | favorite | 105 comments

> Chronic illness patients not only face painful physical symptoms, but also mental ones that linger even when the disease is well controlled.

I could talk a lot about the article, but this lesson should standout.

With a chronic illness, you are forced either by stigma or because you like maintaining relationships, to hide or pretend the symptoms of your disease is better than it is.

This creates loneliness, in someone already under significant strain.

This month an article was published, examining suicide rates in people suffering from my own non-fatal chronic illness. They're ten times higher than the general population, and are unaccompanied by the usual suicide markers. It's no surprise to me.

Chronic illnesses can vary day to day, and having a support network than can support you when things unexpectedly go to pot is essential... And it's essential that the support network won't collapse the moment you do.

If you have the support network... It's essential you use it when you need it, unfortunately, in my experience most people can only really be there for you so often, and people can unexpectedly fail to be the ones helpful to you.

That will be one of the most painful lessons to learn. Who to trust, and how often you can lean on someone else, and what you can lean on others for. Everyone is different, and their circumstances change too, which means every response will be different.

Every symptom, flare and even remission is a mental assault. Make sure you have people manning the battlements.

This is probably the most sensible comment that sums up most of what the article stands for. Too bad it’s sliding down the comment list, I’m sure it could do a lot of good to anyone who just got hit with the bad news and thinks they are alone or that nobody understands what they go through.

I have ulcerative colitis. Same type of disease. Basically there's no cure just management but it probably won't kill us with modern therapies. I basically bleed out my colon and hope it stops with some steroids and biologics.

Smoking helped me more than tremendously. Nicotine replacement did nothing. Last year i quit smoking and fully vaped and had a deathly flare.

Smoking hurts chrons though. The pain is extreme and you don't get opiates because they constipate so just Tylenol. Nsaids are a big no no. I'm about to do another colonoscopy.

The worst part is urgency. During a flare I'll go to the bathroom to bleed every 30 minutes and when it's time to go i literally have 10 seconds to make it there otherwise it's an accident. Sleeping is hard.

So during a flare i have extreme pain, always in the bathroom, little sleep and blood loss.

FWIW there are a fair number of people who report good results for this and the original post issues with keto, fasting and related things on Reddit. A bunch of claims around gluten too.

To add to this: You're fighting inflammatory disease. Generally, do and consume things that lower it.

Mental inflammation included.

Yes, excess sugar/carbs can contribute to inflammation.

I'm afraid I'm going to have to be a little rude here.

You may be approaching this with good intentions, but don't do this.

> Chronically ill people research their diseases ad nauseam. They try more treatments than they can count. In many cases, great scientific minds can’t crack a cause or cure. So unless someone asks for your advice, don’t offer it.

> I'm afraid I'm going to have to be a little rude here.

No, please don't. On HN, it's necessary to make your points respectfully and neutrally, regardless of how wrong others are or you feel they are. If you can't or don't want to do that, please don't make them here. We certainly did not need the dozens of comments' worth of petty bickering that this thread devolved to.

More here: https://news.ycombinator.com/item?id=19210528.

The recent uproar about the NEJM issue containing only marketing is the counterpoint. Dr Fung pointed out that there's no wonder people turn to GOOP when the system is so broken.

So while I understand and appreciate your point, I don't think you understand how corrupted medicine has become. It's now a necessity to do your own research.

Dr Wahls curing of her own MS would be another example.

Edit: here's the goop tweet: https://twitter.com/drjasonfung/status/1095550994430058496?s...

By providing a suggestion, you're implying they haven't tried.

I've spent ten years with a chronic disease with no known cause. I am currently on two trials. You are not capable of naming any suggestion that I have not heard, and that is common in the community.

You don't appreciate my point - you're insulting by making your suggestions. You're suggesting that they haven't investigated something that affects every single part of their life.

As an objective third party, I think your chronic disease, your vast research of it all, and your corresponding frustration has warped your ability to have conversations with people who are less knowledgeable than you are. Where there is no ill intent, insults should not be taken. The insults are your own interpretation, there is no reason to take insult where none exists, especially when someone is trying to be helpful. Best to just shrug and say, "yeah, thanks, but researched this."

When my users are trying to tell me what is causing a bug and they're drastically wrong, I don't feel insulted that they think I don't know my own system. I just smile and have a nice conversation with them. There is no point in picking fights, and the person trying to help is not the one picking the fight.

I'm sorry for your chronic disease, and I can't imagine what it's like. I can't speak to that. But I believe you're taking it too negatively too personally when there's no need to do so. I imagine that isn't too great for personal happiness either.

> Where there is no ill intent, insults should not be taken.

I don't know if this is true even in the general case. It is entirely possible to insult someone with no ill intent, such as "you speak well for a black" or "you're funny for a female" or "you're alright for a homosexual".

I don't believe "have you tried keto?" to a chronically ill person requires different cognitive faculties here.

Note: I am also an objective third party. I don't have a chonic illness and have no dog in this fight. It seems to me that a chronically ill person is saying "while your intentions may be good, they are deceasing my quality of life", and I'm choosing to believe them.

This makes sense to me. I'm sorry to shakna, many apologies. Wish you the best.

shakna 27 days ago [flagged]

> As an objective third party, I think your chronic disease, your vast research of it all, and your corresponding frustration has warped your ability to have conversations with people who are less knowledgeable than you are.

No, this is a common frustration of the entire community. People feel powerless, so they try and help, but you aren't helping. You either cause irritation because it's then ten thousandth time I've heard that advice, or frustration because you are showing a deep lack of understanding.

> When my users are trying to tell me what is causing a bug and they're drastically wrong, I don't feel insulted that they think I don't know my own system. I just smile and have a nice conversation with them. There is no point in picking fights, and the person trying to help is not the one picking the fight.

No. Don't. The relationships are not the same. An illness that affects every part of your life is deeply personal, and you are faced every day with stigma because of it. You're not suggesting useless information, because of the culture and proxy you have to it, you're suggesting the affected person hasn't tried hard enough.

> But I believe you're taking it too negatively too personally when there's no need to do so. I imagine that isn't too great for personal happiness either.

Getting told that I need to listen politely when someone is suggesting an idea of how to fix my genetics is personal. You don't tell someone that they shouldn't be using a wheelchair, or should be using a different one, unless you have a direct and professional connection with their health.

> Where there is no ill intent, insults should not be taken.

Insult was not immediately taken. They were repeatedly informed that this avenue of conversation is insulting. They responded by telling me I'm wrong. As have you, now.

You can't imagine my life with chronic disease? Fine. I'm happy to guide you in interacting with someone with it.

Step one, is not assume you know better. Your suggestions are unwelcome, because they carry stigma. They remind me of all the people I have faced who have told me that my disease is either not real, or able to be overcome by one simple trick.

I'm not angry at you - but I have to say, you have been very... Unhelpful.

More unhappiness comes from misguided altruism, than quiet acceptance.

Can you please not perpetuate flamewars on HN? I don't mean to minimize your situation, your experience, or the frustrations you've encountered. But taking out those frustrations on fellow HN users, regardless of how wrong they are, is not the way to advocate for your point of view on Hacker News. Not only does it sink discussion quality below the level we're hoping for here, it poisons goodwill between users, leading to worse in the future. Also, it isn't in your interest to do this, because arguing in this style only weakens your case.


SolaceQuantum has explained it to me really clearly. I was wrong. Many apologies and wish you the best.

Thanks, and hopefully this can smooth some paths for you in the future, to help everyone involved.

I meet people all the time whose sole source of information is their doctor. And, I said 'FWIW' as the very first word.

I realize this is the internet but that's a stretch to find an insult.

I believe the concern here is that while the intentions to provide advice may be good, the actual result is harmful, and thus it is better not to provide advisement unless explicitly requested in the specific context of someone who has a chronic illness.

The assumption of providing advisement is 1) your advice might be helpful, 2) advising isn't itself a harmful act, 3) you have something worth advising about. In the specific case of a chonic illness, the probability is high that all these assumptions are not correct. Therefore, advising a chronically ill person requires exceptional behavior compared to someone who is not chronically ill.

It's also important that this(unwanted advice) is a common issue that adversely affects a person's QoL, as they are forced to re-address the same ground consistently when they already have limited productive resources.

> adversely affects a person's QoL, as they are forced to re-address the same ground consistently when they already have limited productive resources.

But that's not what happened here. Steve didn't prompt anyone for a response of any kind. He offered a quick one-liner of a suggestion. Shakna wasn't even part of that thread, and just dropped in to tell him to shut up.

It's the internet man. You're quite free to disregard the advice.

Shakna was attempting to use a common social cue, criticism, to prevent Steve from continuing to apply inappropriate social behavior, especially relevant given that Shakna has a decade of experience in the nuances of social dynamics in the context of chronic illness. I interpreted Shakna's sharp rebuke as no different than any other expert informing someone that they're participating in highly ignorant behavior.

By criticizing Shakna, you are also participating in a social cue to try and prevent Shakna from continuing to apply inappropriate social behavior (in this case, criticizing others unnecessarily). Does "It's the internet man. You're quite free to disregard Shakna's criticism." not apply also to you?

"Sharp rebukes" are exactly what the site guidelines ask users not to give each other, regardless of how wrong someone is or you feel they are.

If another comment was somehow insensitive, it's fine to gently offer some information about that. It's not fine to blame one another or take a thread massively off topic.


Participating in a social cue...? I just... I don't know.

Don't get me wrong, I'm totally capable of being offended by inane low-content posts on the internet. But I also put some effort into filtering my responses in deference to the recognition of my own biases and insular perspective. I fail a lot, but I try.

Shakna's response seemed to lack any such self awareness. Maybe I'm wrong; maybe i'm speaking from a bubble again. But I do know, and I hate to point out the obvious here, that this is HN -- pretty much the opposite of any sort of health-issue-specific forum. If you post a note regarding a health issue here, you will get advice, likely involving keto nowadays.

I understand Shakna's desire to mold HN into a place better suited to the specific needs of folks like Shakna. Nothing wrong with that. But Shakna's "decade of experience in the nuances of social dynamics in the context of chronic illness" is a lot of weight to expect a random techy internet forum thread to bear, and politely hand-slapping a random dude in a forum replete with dedicated keto experimenters is... well... it clearly risks frustration, right?

> If you post a note regarding a health issue here, you will get advice, likely involving keto nowadays.

Does this mean this behavior should be considered acceptable, or that criticizing such behavior should be considered above criticism?

> is a lot of weight to expect a random techy internet forum thread to bear,

It is also weight to engage in it by providing unsolicited advice. By choosing to engage with the heavy subject, people can choose to engage with their engagement. This is normal human interaction regardless of its weight.

> it clearly risks frustration, right?

Is that for you to decide? I like to believe Shakna is intelligent enough to choose to engage in what they please, even if they are frustrated by it. It isn't my place to judge or advise them, and I'm frankly entirely uninterested in engaging with them about how frustrated they're allowed to get. I'm more interested in engaging with you about how much you should get to tell Shakna how they should react while reacting yourself.

> criticizing such behavior should be considered above criticism?

Certainly not! It's critical that criticism not be criticized, however I assure you that your overly critical appraisal of my criticism will not be left uncritiqued. By me, right now.

> It is also weight to engage in it by providing unsolicited advice.

No it's not. That's the whole point. There's nothing weighty about Internet User Steve's unsolicited two cents. Shakna can take it or leave it. Or, he can complain about it, tell Steve he was wrong to open his mouth, and then meet the inevitable pushback with disgusted indignance while two other frisky threadmates get all meta in the corner. Personally, I'm left none the wiser for having witnessed Shakna's precipitated grievances, whereas I feel it would be a bit of a shame if Steve was made to curtail his freewheeling expression, which in this case included a link to a horrifying story about the NEJM (thanks for that BTW Steve).

> I'm frankly entirely uninterested in engaging with them about how frustrated they're allowed to get.

You're right, that would be bad! So don't do that. Instead, gently encourage Shakna to cut poor Steve a bit of slack. You can, without judgment, point out that Shakna's reflexes, gained through years of pain and frustration, are maybe not a productive criteria by which to interact with well-meaning random internet folk, and that some extra persistence in grace, instead of descending into remonstrance after a just one exchange, is far likelier to win converts to Shakna's way of thinking.

Go ahead, try it. Let me know how it works out.

But the ultracrepidarians need reminding that they don't know what they're talking about and that their well-meaning advice is not received as a freindly gesture, it's received as something that's fucking annoying.

As someone who both bestows and lays claim to annoyance in generous measure, I won't dare to disagree.

>I meet people all the time whose sole source of information is their doctor

I seriously doubt that. Everyone who has a chronic illness is bombarded constantly by friends, family, acquaintances, and strangers with unsolicited "advice" as to how to cure their disease with diets, exercise, oils, herbs, craniosacral therapy, prayer, meditation, homeopathy, enemas, chiropractic adjustments, talk therapy, vitamins, supplements, and every other crazy thing you can think of.


You literally give unasked advice in your other thread.

I'm not sure we can run open discussion boards with the principle that you can't insult anyone for any reason even unintentionally.

shakna 27 days ago [flagged]

> I'm afraid I'm going to have to be a little rude here.

> You may be approaching this with good intentions, but don't do this.

I calmly asked you to stop a behaviour.

The insult was only taken when you asserted your belief that I, a victim of the situation, is fundamentally wrong, and that you, a random stranger, have the right to do something people, not just myself but the author of the article and many others, find harmful.

Open discussion will always bring conflict. That's not the problem here. The problem is you've told something causes conflict, and you aren't responding with sensitivity, or grace.

I've attempted to explain to you the nuances of the behaviour, and why that may cause conflict.

> I calmly asked you to stop a behaviour.

Then let me calmly ask you to stop. Chill. Go walk in the woods.

shakna 27 days ago [flagged]

I can't actually walk, so no thanks. But no, you haven't irritated me enough to be a concern, and I agree, the effort to convince someone who has no wish to understand is more than I can spare.

If there's no intent to insult, only to help, maybe it's your responsibility that you get so offended.

shakna 27 days ago [flagged]

It's my responsibility to inform you that you're being unhelpful.

That makes it your responsibility to change your behaviour.

If you ask someone to stop hitting you over the back of the head every time they walk passed you, it is reasonable to experience irritation if they don't change that behaviour, regardless of intent.

That's just like, your opinion man. In your example I wouldn't be offended about any discussion. They hit me in the head, I'll retaliate the first time they do it.

Any patient who tells me they've got to have my private number will be told that they've got to get a different doctor. It is vitally important for me to be able to disconnect from patients and their potentially bottomless well of need in order to maintain sanity.

Looking over the article, and guessing, here.

This isn't likely to be a what a phone appointment is.

A phone appointment is what it sounds like. A set time, generally within normal office hours, pre-arranged, for the doctor and patient to speak.

It's simply a way of not taxing the patient with travel, especially if they need to travel any significant distance like to the next town.

The parent comment was reading from a different line: `I made lists of questions for my doctors and insisted they give me their personal phone numbers.`

That is a pretty big leap from just a single statement.

I've noticed the same problem and I'm not in the medical profession. Many people don't have good judgement when given direct 24/7 phone access.

I'm curious how this varies by speciality.

It's pretty obvious why you'd want this space. Constant on-call status is rough enough for technical roles, I can't imagine how much higher the burden would be when people's health is at stake and 'false alarms' are human fears instead of automated notices. Long hours and high emotional burdens scream for boundaries. But... I've also seen doctors who seem to consider this standard practice. Not that they're obliged to respond immediately, but they even offer phone numbers unprompted. (I hope for their sake they have a different number for those calls.)

What stands out to me is that this article is about Crohn's, a probably lifelong condition for which a doctor might see a huge number of patients. The doctors I've seen giving out personal phone numbers are oncologists and similar, who see people for long but finite stretches and have relatively low patient counts. (And, of course, are dealing with a disease where "is this serious?" is not-uncommonly met with "go to the ER immediately".)

I'm not sure what your specialty is, but I'd be really interested to know whether this is just a per-doctor preference or has broad patterns between fields.

I try not to bother my doctors for this reason. I'm the opposite.

I think everyone should avoid interacting with doctors unless it's absolutely necessary (in the US). They have to diagnose hundreds or thousands of patients, and it's unreasonable to expect them to care or deliberate about your specific needs. They are running or working under a business, and are incentivized to minimize patient time and maximize billing. Even a phone call to their office can be converted into an insurance claims if you're asking them to correct a mistake, which I found out when I looked at my health insurance online. This also means that you should always be skeptical if doctor recommends a certain procedure, especially if he's involved. You have to assume he's acting in his or his employer's best interest under our current model of health care.

How could I know if it's "absolutely necessary" without being a medical professional or consulting one?

What a terrible system we've got.


Service to others doesn't mean lackey to all. Boundaries have to be set for sanity's sake, for both patients and doctors. There are emergency lines if the situation is truly dire, and this is coming from someone who is both a brittle diabetic and an epileptic.

As a developer I wouldn't give out my home number but I would be coding away from work. I got into programming because I liked it.

Do people get into medicine for the same reason? Do they go home and continue practising medicine?


Doctors who don't set boundaries and who perform an unlimited amount of emotional labor are those who burn out.

There's no medical reason for a doctor to be on-call 24/7/365, and it's stupid to expect them to. If an urgent medical issue comes up at 2 AM, the patient can go to the ER, which is what the doctor would tell them to do anyway.

I really want to agree, but there are some situations where it does need to be that one doctor. The below anecdote notwithstanding, I do agree that any patient who demands your personal number is the last patient you should be giving it to.

My aunt had a condition that causes fluid build up in her brain. She has a slightly unusual shunt arrangement, and over Christmas (we now know) it got blocked up. She started developing neurological symptoms, and the only person who knew enough about her treatment to be able to sort it out was her doctor.

The actually had his home landline number, but he was away, and it was only due to luck of a call coinciding with the neighbour feeding the cat that they were able to get the number of where he was for Christmas. By that point, my aunt with unconscious in hospital, and might well have died if treatment had been delayed any more.

Thanks for sharing that story.

It's scary that sheer happenstance saved your aunt's life. I wonder how medical record keeping could be improved to help with that scenario.

What's scary to me is that after 10 attempts at the landline over a period of time, I would have (correctly but unhelpfully) concluded that he was away for Christmas and abandoned that approach. My Uncle was more persistent.

In this case I think it was less knowledge of the particular case, and more the expertise in that specialised situation. Skillset rather than records.

Well, here's to hoping we'll all be seeing an all-knowing Dr. Google in 50 years.

A lot of offices and insurance companies have a nurse's hotline available in the off hours too to handle these sorts of requests. Though I'm not really sure what kind of advice they can offer other than "go to the ER."

Yes. My father-in-law's staff relay a high proportion of calls to him. The staff triage the requests, answer questions when they can, and forward questions they can't. The staff know how to use the doctors' time wisely. They ask the right questions, provide updates, no chit chat. It has to be that way.

There are a few special patients he'll give his cell number to. Pregnant moms especially I think. He's a country doc and the only good baby doctor within a hundred miles, so if there's an OB patient who he thinks is higher risk, and who he knows won't abuse his cell number, he'll give it to them no problem.

Maybe the patients to whom they offer their private numbers, and the patients who "tell me they've got to have my private number" are non-overlapping sets.

I'm sure that experienced doctors can spot people who are going to ruin every weekend a mile away, and also those responsible enough to call only when it really is appropriate.

> The worst have been preachy, god-complex douchebags.

Is this sideways dig really necessary? I could say the same about programmers (and I am one).

I count half a dozen doctors and nurses among my inlaws. None of them will give their personal phone numbers out to patients. If a patient asks, they're politely told to call the office, who will then curate the calls.

If you've ever been around a doctor, especially a GP, you know how many calls they get. My father-in-law takes dozens of calls a day from his office, several of which come at night when he's asleep. If he were expected to take calls directly from patients, he'd be completely unable to do his job.

So, serious question for you jachee: is it possible that the doctor you're responding to has some insight into the challenges of his job that you don't?

It's indeed possible that there's insight there, but with phrasing like "bottomless well of need" there's also an obvious disdain for humanity which seems likely due to having never been seriously ill, scared or suffering. Having several close acquaintances, including my wife, who deal with chronic illness it set off red flags of "only in it for the money" insight or not.

I've heard the phrase "bottomless well of need" -- exactly that phrase --from more than one of my family members in the medical profession, all of whom are caring to the point of self-sacrifice. It's a vivid, pointed, and completely accurate description of a significant minority of patients who present a real challenge to doctors and nurses.

My brother-in-law is an ER doc. He treats an alarmingly high number of patients who threaten to sue him if he's not willing to give them his phone number, write an immediate referral, or prescribe opioids. These are patients with real pain, real problems, who are understandably desperate for relief, and who are easily capable of completely dominating a doctor's time and attention.

The implication of an obvious disdain for humanity here is pretty uncharitable. Just as it's difficult to relate to chronic disease from the outside, I think it's difficult to relate to the challenges of treating and caring for the afflicted.

> with phrasing like "bottomless well of need" there's also an obvious disdain for humanity

I think you are wrong to make that assumption.

There are tons of people with no sense of boundaries who will make contact over and over for very little reason. It only takes one or two of those people to ruin it for the rest of us.

Chronic illness demographics - particularly for diseases of inflammation - have exploded in the last fifty years, outpacing the supply of doctors and then some. The need is now bottomless, and it is in fact a need.

My clients, as a whole, are a bottomless well of various IT needs. This is by design.

Some call it job security. Fortunately, most of those users call only during their office hours. Can't say patients would have office hours, so it's more complicated.

One patient with health anxiety will call daily, multiply that by any number. Then add family members.

I mean, a "bottomless well of need" is basically exactly what a chronic illness is. Have some compassion; doctors and medical professionals deserve to clock out at some point just like the rest of us. It doesn't mean they are in the wrong profession.

>patients and their potentially bottomless well of need

That's worded with a tinge of contempt. Not saying it's undeserved--I've never walked in your shoes, and I can imagine the medical profession being exhausting and one of high-burnout.

But, it does make me think of how things have changed in this regard, for both doctors and patients. Time was that doctors made house calls, knew every patient personally, and frequently cared for multiple-generations of a family. There seemed to be a certain intimacy baked into the profession. Of course, that's pretty much impossible today with insurance, medical costs, etc. making medical practices more of a numbers game.

On the other end, patients are consumers like any other. And, after running a consumer-facing business for many years, I can say that there seems to be an unreasonably high-expectation of service and outright deference to the customer--sometimes bordering on a sort of pathological entitlement.

The result is that there seems to be a lot of hostility baked into transactions and other professional interactions. Given the personal nature of one's health, I can only imagine this to be amplified.

> Time was that doctors made house calls, knew every patient personally, and frequently cared for multiple-generations of a family

They (some) still do. But they have to have their patients' numbers, not the other way round, if they want to have a life of their own.

Some people can devote the totality of their life to patients, and it's a good thing if the article author could find some of them I guess, but most doctors also have a family and their own needs, which is extremely difficult if your patients can call you whenever they want.

Doctor or not, you don't want to risk receiving constant calls from a few particularly difficult patients at any time of the day or night while you're trying to lead a life with a husband/wife and kids. And that's not even taking into account the potential for abuse from other (or the same) patients who will find there a method to bypass appointments and to avoid paid consultations.

On the other hand, email works very well for "push requests" from patients, and is a lot less disruptive for the doctor.

Time was that doctors made house calls, knew every patient personally, and frequently cared for multiple-generations of a family.

Time was also that doctors had very few treatment options for a vast array of maladies that afflicted their patients. Now we use high technology to try to win every fight. Bedside manner is nice, but it won't stave off lymphoma.

That happens when communities and communal links break down into mere sellers and buyers...

Imagine you have 7 minutes for a patient, and off to the next one. Imagine 90-95% of your work time is spent in front of computer, filling in forms for every patient coming in, getting any treatment or leaving hospital. Each one takes 60-90 minutes (no kidding). My fiancee's daily/nightly routine, every single day, in biggest hospital in Switzerland.

Our romantic views on what it is to be a doctor are long gone, unless you go with orgs like MSF to ie Africa. Reality is, most of doctor's work these days is pure bureaucracy (maybe apart from surgeons). Any job that gets into this 'corporate work' state will have any positive energy drained out of it.

Do you know any doctors personally? Most of them end up pretty disappointed bitter with their work right after school - those rosy expectations meet reality. In fact, in our circle of friends where there are many young doctors, there is 0 happy with their work.

Yeah, I know. That's pretty much what I said.

Being stuck in the system without a diagnosis or effective treatment is very scary and maddening. Going through the medical system is a big fear of mine.

The author doesn’t describe himself as stuck in the system at all. He has a diagnosis, it sounds like many doctors have tried their best to remedy his symptoms and found something that somewhat helps. If anything, he seems grateful for the medical system.

For what it's worth, I believe the author is a woman.

Interestingly, and anecdotally, I've noticed that auto-immune diseases such as the author's Crohn's, and my wife's Fibromyalgia/vasculitis seem to affect women more frequently than men.

I can confirm firsthand that the author's major points are all things that have borne out since my wife's diagnosis. We've had good doctors and less-good ones; frustrating insurance dealings that seem to change year-to-year with no rhyme or reason; and supportive friends who may or may not actually understand.

You're not wrong, most autoimmune diseases are shown to have increased prevalence in women > men.

However, we (maybe just me, I havent looked at recent literature) don't yet know if that is due to selection bias. Women are simply more likely to see a doctor for their health concerns.

There's a fantastic book called "The Body Keeps the Score" that touches on some of your observations here.

We are in a dismal state of medicine on many chronic illnesses, such as the emerging study of Mast Cell disorders which could be affecting upwards of 10% of people but aren't understood by most doctors and is rarely diagnosed (in fact diagnostic criteria for Mast Cell Activation Syndrome aren't even agreed upon yet).

Even to get to the point of treatment you have to be extremely scrappy, spend endless hours on research, have a lot of money available for non-insurance-covered doctors, and still expect to be treated like you are a hypochondriac.

I wrote a rant in another comment, but I want to echo this here. The endless research, the costs, the looks you get from doctors, it's all very true.

Thanks for the google terms. Maybe it'll help out!

Throwaway for fear of being discriminated against based on this post.

I found out last year that my mentally and physically debilitating chronic illness is caused by mercury toxicity. This was after spending over a decade studying alternative medicine and reading the work of biochemists. I've come to the conclusion that doctors are not appropriate for treating many chronic illnesses--biochemists are.

I'm following a treatment protocol that was published in 1999, has it's roots in the 70s, and in addition to supplements uses medications that were invented in the 50s. It's nothing short of miraculous. There are thousands like me who are having equally miraculous results, including 4 close friends of mine.

It's sad how long it takes for legitimate cures to go mainstream. And this cure in particular has been repressed for political reasons, and probably also profit-motive reasons (although I suspect unconsciously). The people with this illness are routinely mocked by healthcare workers, claimed to be idiots by the mainstream media, and avoided in everyday life if they talk about their illness.

After this experience, I have zero faith in the current healthcare and political system to cure chronic illness. It would be better to give up on it entirely and let biochemists take the lead.

And it's not just the government/healthcare-system/big-pharma/whatever, it's everyday people who just repeat what they hear because it's easier than evaluating the evidence. And then they vote to keep the same system in place that fails millions.

Throwaway for obvious reasons.

My SO has one of these types of diseases. It is called Interstitial Cystitis (IC), it's one of the 'bathroom' conditions. Essentially, the cells that make the mucous layer in the bladder were eaten away by a bacterial infection and, hence, there is not longer any protective lining from the urea and other waste products. IC is more of a symptom than a disease, and there are many ways it manifests in ~8 million Americans. IC is incredibly painful when your bladder is full. Think blistering sunburn, but on the inside. Sure, my SO has good days and bad ones. Some foods are known to be more harmful than others and my SO avoids them. Some things help mitigate IC, and the road is long.

But whatever. None of the 'science' really matters here. The pain remains.

What the article was talking about is SO TRUE. Like, incredibly so, and I'm not the affected person, my SO is. The disease is just utterly maddening.

We're both PhDs, myself in a bio field, and my SO in a geo field. We've tracked the hell out of everything, from every morsel of food, to every stair-step, to thrice daily urine testing with a medical grade machine we bought used and fixed up. We're up-to-date as can be on the literature and the latest treatment plans, methods, and equpiment. As PhDs, we know the field very well by now. We're not quite at urine replacement therapy yet, something we've mostly just dreamed up as a treatment, but it's getting close.

It's nothing but noise. We know our stats, we can tell. The pain remains.

The bit in the article about vaping, CDB, bone broth. So freakin true. We've tried it all. Edibles, daily yoga, both at once. Retreats at monasteries and on beaches have produced no results. We've gone to total keto, to total meat, to total raw-veg diets, fatless, sugarless, protienless, etc. Daily HIIT did wonders for my SO's mile times, it went down to under 5 minutes! My SO even got exercise related asthma. We've done water therapies, and sensory deprivation tanks together. Every quack pop-culture fad since the 1820s, we've done it.

Nothing comes out of it. The pain remains.

Therapy has been a wash. Some of the integration work has helped out my SO's metal state. But honestly, most of the therapists around us are bunk. Three of them didn't even know that the urethra wasn't connected to the sex organs. I've no idea what they teach therapists, but a twinge of anatomy may be helpful. We've gotten religion, a few of them, only to be smacked in the face about how we need to confess more and sin less, or about the gender roles in our house, or about how Jesus loves us, but not in that way. I've been told to leave my SO to my face, with my SO standing right there, by more than one religious leader.

No matter how much we pray, still the pain remains.

The online and IRL groups have been a disaster. When some meet, it's mostly just tears and weeping. Nearly no couples stay together after 5 years, from what we've seen. The script is that the unaffected SO declares that nothing will drive them apart, typically somewhat aggressively. 24 to 18 months go by and then just the IC ridden person is attending alone or posting online. Divorces happen frequently. We've been to more than a dozen funerals and seen many posts online that give the last updates for what happened to the frequent poster: typically they choose pills, a few use a gun, some swan-dive off the Golden-Gate; there's a lot of ways people choose. You forge bonds with these people, try to help them up when it gets bad. And they just stop coming to meetings one day. My SO and I, I dunno, it's tough, like really tough.

And still the pain remains.

My Mom emails me new quack remedies all the time. The most recent was about just eating raw ginger all the time. We're going to try that out next week. My Mother-in-law just thinks that it'll get better when we get pregnant and then go away. The pain is too much for most patients to even think of attempting intercourse, many sufferers use a LOT of local anesthetics to do the deed, if at all. I've been at the end of my rope a lot of times, and then discovered that there is a lot of rope left. Love is funny like that. I've had heart to hearts with the family about how I NEED help. The article is great about that tiny little aspect. None of the family ever bother to google a thing about IC and then most forget anyways. It's constant education even towards very close family. I've given up on reaching out to friends and family, it's just too tiring.

And still the pain remains.

I've no idea why I wrote this rant. Sorry for the wall of text. I'd love to hear any remedies that you may have for IC, we're up for anything. I guess I just wanted to add another voice that says that the article is really really really truthful, at least, towards me.

I can't speak to IC, I don't know it well enough.

I can't speak to the helplessness of being the SO, watching someone you can't help, but love so deeply. I've been the one who experiences the pain.

But... From what you've said, your wall of text, you are stronger than so many people I've seen. You've recognised when you need help, and that helps both of you. That's amazing.

I can't offer any remedies you might want, but I can offer a voice telling you that you aren't alone, and your story makes me proud that someone hurting has someone so strong next to them. Even when you don't feel that way.

I'm so sorry to hear about your experience. I can relate to it a lot.

I'm responding because it sounds like you're desperate to try anything. This sounds like a long shot, but IMO, I don't think it is.

My chronic illness turned out to be mercury poisoning. It has a wide ranging affects depending on your genetics and other environmental factors, and is known to cause a large variety of symptoms. I have 4 close friends who have similar-but-different problems than me, and they also found out it was mercury toxicity. I'm convinced this is an epidemic that the healthcare industry refuses to evaluate for a variety of political and financial reasons. I was an environmental engineer before I became too sick to work, so I know a thing or two about the politics of toxins.

The cure is Andy Cutler Chelation therapy. There is a $99 hair test that is very reliable in giving a diagnosis. I went from not being able to stand up or listen to someone speak an entire sentence to being someone who can pass as a normal human being, and I continue to improve rapidly.

It's worth a shot. Best wishes. Feel free to message me.

> I've no idea why I wrote this rant. Sorry

Don't apologize, you wrote it so we could read it. That's what the internet is fucking for IMO.

Thank you, seriously, for sharing this. I hope your SO and you find the way.


I think we should just let people be allowed to die by medical assisted death and be it mental or physical pain (whatever illness). I've known persons with gender dysphoria who want to end their life and they're rational people. The medical system even has assisted death but ignores these people in pain and they turn to self suicide. Some fail and end up in worse states emotionally & financially.

I don't think a low barrier to entry is a good idea for something as serious as medical-assisted suicide. Being in mental or physical pain, outside of absolute terminal illness, and being able to choose death for something that may very well be a temporary problem is not a good solution. You mention people who turn to self-inflicted suicide, who fail and end up in worse states emotionally/financially. But what about those who have failed their suicide attempt and eventually end up in a good place and live a happy, normal rest of their life? Had they been given the option of medical-assisted suicide, they would have never have gotten the chance to experience that.

Who cares about the what if game. A system should be in place for persons who are in pain that want to successfully end it. No free will exists until such a system exists.

I only mentioned a what-if example in response to your what-if example in your first comment. Medical-assisted suicide systems are already in place in numerous countries for terminally ill patients. Are you suggesting these systems be implemented for anyone? Your mention of free will suggests that these systems should be in place for all people and to be done promptly without question as anything that impedes this, (eg, physical or psychological examinations, waiting periods, etc.) would also be going against free will. I don't think a person requires easy access to death in order for free will to exist. People are irrational beings, especially so when considering taking their own life; allowing these people to make severe decisions in extreme irrational states, is well, irrational in itself.

I don't see how what I wrote is a what-if example. Maybe you can clarify more and I'll do as well.

The person who I know suffering gender dysphoria has been pursuing medical assistance in dying in Canada. She has been seeking it by going to Doctors for multiple years and with a psychiatrist following her.

She is a rational person who approaches it as any other chronic illness with tremendous pain. She deeply expresses how the majority of her life was stolen from her because of the illness and not being able to obtain treatment young for it because of parental figures & bad doctors.

She believes she is valid in getting the procedure to end her life compared to anyone else. Doctors will tell her she has valid points but will refuse to say much and skirt her out of their offices whenever they have a chance. She is not irrational.

I know for a fact the belief of everyone should continue living because the "what if game of it may get better" is irrational. She has had her life stolen from her and continues to live in pain but for the chance to have some humanity given to her (a safe way to die). She usually doesn't eat anything to divert her conscious to starving and where she will not focus on much. I'm a co-worker/friend of hers.

In your first comment, "Some fail and end up in worse states emotionally & financially." which I responded to with my what-if, which was "But what about those who have failed their suicide attempt and eventually end up in a good place and live a happy, normal rest of their life?"

"I know for a fact the belief of everyone should continue living because the "what if game of it may get better" is irrational." What part of believing in a better future is irrational? Or more irrational than someone wanting to end their own life? We can end the conversation if it continues to a nihilistic viewpoint where death is the only true solution to things.

Your co-worker/friend's situation is unfortunate. I lived 3 years with someone who longed for death for nearly their entire adult life. In that time they believed they were acting rationally, that things would not get better and that they were irreparably broken; the only solution to them was death. They had been through numerous psychiatrists and eventually ended up at one who was able to properly diagnose them as having a form of bipolar disorder. They received prescription treatment and the longing for death ended.

I understand there are extreme differences in gender dysphoria and bipolar disorder, but just because their current state, or the current system is unable to help her, doesn't mean death is the correct answer. We should focus on improving mental healthcare rather than opening up the choice of death to those we're currently unable to provide help for.

Improvement to mental healthcare would be removing the restrictions of medical assistance in dying and making it similar to a person who is going to die from suicide when they’re being honest about how the illness is forcing it upon them.

The part you quoted from me is what research show in regarding gender dysphoria that goes untreated past puberty. There isn’t much positivity for the latter and drugging a person so their perception changes isn’t necessarily what I think is much different than suicide of the person. Similar to how in the past conversion therapy was used to destroy the person and create a new person.

Anyway I don’t believe I’m being nihilistic and I can righteously think it’s people putting their own ideology first in refusing my friend the ability to have her wishes granted.

Suicide is not some inevitable, uncontrollable end to any disease or illness. It isn't cancer, or some other form of terminal illness. It is an active choice made by those who want to end their own life.

If suicide and prescription drugs are synonymous as they both result in the literal and figurative death of the ill person, would it not be better to choose the 'death' the allows the person to continue to live?

It is nihilistic if you, and your coworker, believe that past a certain age threshold (or any other arbitrary measure) a disease/mental condition is untreatable and the best alternative is suicide.

>It is an active choice made by those who want to end their own life

That is your ideology being forced upon persons who desire death. There is no proof that people have free will and every death (suicide or death by cancer) is a natural death if free will doesn't exist.

> would it not be better to choose the 'death' the allows the person to continue to live?

That sounds like a worse fate if I was in the situation.

> It is nihilistic if you, and your coworker, believe that past a certain age threshold (or any other arbitrary measure) a disease/mental condition is untreatable and the best alternative is suicide.

That is just a forceful opinion upon labeling others and who just believe they should have will over their own death when the pain is unbearable. Her case is suffering from puberty and being conditioned throughout her life to be a certain way. She missed her youth, early adulthood and shouldn't be forced to live in today's society where she is constantly reminded of the abuse. She believes the best solution is suicide for herself. I only agree with her and think people should have authority over their own death after long talks with her.

>There is no proof that people have free will

Then this entire exchange was meaningless. In the absence of free will nothing matters. Nihilism at its finest.

That's a fallacy you're constructing. I have known persons who are into nihilism and they would argue the same that nothing matters with free will. I don't believe the exchange was meaningless because my friend will be reading these replies and have more experience in conversing with doctors. She get's similar responses to what you convey when arguing her position. Btw if you're downvoting my responses on an other account. You're extremely childish if so. The only reason I assume this is the case because the other is reply old enough to where I assume it's the case. People are not supposed to be using the downvoting system in a childish manner is what I believe is true for hackernews.

If we're going to talk about no free will existing until certain systems are in place, I would say systems of actual good medical care, without financial stress when you have a serious illness, are a pre-requisite to having "free will" to decide to end one's life when in such a situation. Giving up because you are financially ruined and still can't get attentive medical care is no more "free will" then _not_ killing yourself because "systems in place" aren't available to help you do it.

That is a made up justification to force a person into living in a broken system when in unbearable pain. While ignoring the person who wishes to end her life and exerting one's will forcibly upon another who is not privileged.

How about you fix the system first before making this argument. Good luck.

the narrative of 'chronic' illness is a shame

edit: I always get beat up on the internet when I make comments like this. Not sure why I keep doing it. Slow learner. In this case, I meant that it is a shame medical professionals tell folks that their issues are going to be with them for perpetuity, as in a lot of cases the medical professional is reinforcing a narrative of helplessness.


What part of Chrohn's doesn't fit the definition of chronic for you? Or what part of the article contributes to a shameful narrative?

The word "placebo" has been used against me over and over. It is frequently used as a justification for ignoring chronically ill people. It suggests that we are incapable of feeling anything physically real in our bodies.

Totally agree that chronic illness is curable if you look outside the traditional healthcare system. But that book is hand-waivey mumbo jumbo.

> It suggests that we are incapable of feeling anything physically real in our bodies.

It makes me sad that this is the representation the word has to you. I think the book is an honest attempt to change exactly this type of impression about the term placebo.

the book is what you make it. most of the beginning of the book is actual cases of folks taking their health into their own hands, which I find empowering.

certainly dont condone throwing placebo around as a reason to ignore chronically ill people.

just think folks are not presented with this path of recourse by the traditional healthcare system. the placebo is treated as a dirty word and stigmatized. why not attempt harness it? who cares if you cant currently explain the mechanisms at work, the results are what matter.

I'll bookmark it and maybe look at it someday. But my illness is caused by mercury poisoning, and I'm responding dramatically to treatment, so not very interested in inexplicable theories at the moment.

well yeah. if you have an actual diagnosis such as that, a treatment protocol known to be effective makes perfect sense.

Regarding your edit: Had you written that in the first place people might have reacted much differently instead of "beating you up"...

The original statement just sounds like a vaguely provocative (but maybe not, because it's so vague) statement with nothing to back it up. Hence the negative reaction

I certainly understand

Unless you or someone close to you is suffering from one, you won't understand what it's like.

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