
Things I Wish I’d Known Before My Chronic Illness - metaphysics
https://www.nytimes.com/2019/02/18/smarter-living/five-things-i-wish-i-knew-chronic-illness-crohns-disease-ibd.html
======
shakna
> 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.

~~~
close04
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.

------
homero
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.

~~~
SteveCoast
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.

~~~
shakna
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.

~~~
SteveCoast
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...](https://twitter.com/drjasonfung/status/1095550994430058496?s=09)

~~~
shakna
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.

~~~
SteveCoast
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.

~~~
SolaceQuantum
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.

~~~
nate_meurer
> _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.

~~~
SolaceQuantum
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?

~~~
nate_meurer
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?

~~~
SolaceQuantum
> 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.

~~~
nate_meurer
> _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.

------
aladoc99
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.

~~~
unclebucknasty
> _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.

~~~
saiya-jin
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.

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

------
xfitm3
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.

~~~
bluedevil2k
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.

~~~
jachee
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.

~~~
epmaybe
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.

------
mcfunk
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.

~~~
ICThrowaway
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!

------
existentialhalt
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.

------
ICThrowaway
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.

~~~
nate_meurer
> _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.

~~~
ICThrowaway
;)

------
bellerose
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.

~~~
CaramelSauce
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.

~~~
bellerose
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.

~~~
jrochkind1
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.

~~~
bellerose
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.

------
mnorton
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.

[https://www.amazon.com/You-Are-Placebo-Making-
Matter/dp/1401...](https://www.amazon.com/You-Are-Placebo-Making-
Matter/dp/1401944582)

~~~
existentialhalt
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.

~~~
mnorton
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.

~~~
existentialhalt
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.

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

