Things I Wish I’d Known Before My Chronic Illness
nytimes.com
nytimes.com
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.
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.
Mental inflammation included.
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.
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.
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...
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.
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.
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.
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.
I realize this is the internet but that's a stretch to find an insult.
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.
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.
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?
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.
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?
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.
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.
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.
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.
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.
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.
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.
What a terrible system we've got.
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.
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 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.
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.
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.
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.
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.
Thanks for the google terms. Maybe it'll help out!
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.
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 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 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.
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.
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.
"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.
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.
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.
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.
Then this entire exchange was meaningless. In the absence of free will nothing matters. Nihilism at its finest.
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.
https://www.amazon.com/You-Are-Placebo-Making-Matter/dp/1401...
Totally agree that chronic illness is curable if you look outside the traditional healthcare system. But that book is hand-waivey mumbo jumbo.
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.
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.
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