
Yeah, I'm sick. Read all about it - sp332
http://forgetamnesia.tumblr.com/post/103477584226/yeah-im-sick-read-all-about-it
======
throwaway67851
This is a very unfortunate story, and it's also very unfortunate that the
author hasn't been helped by medical science. The author's subjective
suffering should not be up for debate. Idiopathic pain and fatigue disorders
are impossibly frustrating to diagnose and treat, and have a tremendous
negative impact in a person's quality of life.

That said, this post has many hallmarks of pseudoscience, and I'm afraid that
the author may be invested in pseudo-scientific diagnoses to his own
detriment.

For example, he is very specific about the genetic origins of his disorder and
even enumerates three very specific downstream effects of his genetic
polymorphisms (low catecholamine levels, 'toxin' retention, and high
elimination rates of various minerals). However, any genetic disorders that
are well-understood enough to detect and enumerate like this would absolutely
have a name and associated diagnosis.

Furthermore, the specific factors he lists (low serotonin and dopamine, high
toxin retention, high mineral elimination) map more closely to
pseudoscientific principles than they do to actually medical conditions. For
example, his claim that his body specifically stores 'toxins' such as benzene
and mercury while 'normal' people's bodies eliminate the same toxins is a
classic pseudoscientific explanation that has no basis in reality.

Again, I'm not suggesting that he isn't suffering or that his symptoms aren't
actually happening. But the amount of pseudoscience in this post makes me
concerned that he is moving in the wrong direction or even entering a cycle of
worsening his own symptoms with his pre-occupation with pseudoscientific
diagnoses and insistence that mainstream medicine can't understand his
symptoms.

This is a surprisingly common scenario, common enough that it has its own
diagnosis:
[http://en.wikipedia.org/wiki/Somatic_symptom_disorder](http://en.wikipedia.org/wiki/Somatic_symptom_disorder)
The greatest hurdle in treating a somatic symptom disorder is convincing the
patient that mental health treatment will be beneficial to their symptoms,
which are largely physical. As a consequence, many sufferers turn to
alternative medicine which provides comforting but largely false physical
explanations for their symptoms involving disorders such as high toxin levels,
low mineral levels, and low serotonin and dopamine levels, which is precisely
what the author insists is causing his symptoms.

~~~
JacksonGariety
Pseudoscience is not necessarily bad. Most of psychology and philosophy, for
instance, is essentially pseudoscience.

~~~
thedufer
Can you share your definition of pseudoscience? You are clearly using quite a
different one from the rest of the commenters here. Under the usual
definitions, philosophy is neither science nor pseudoscience, and psychology
is firmly in the realm of science.

~~~
JacksonGariety
Pseudoscience is a non-scientific practice which people ~generally assume~ to
be scientific.

There are many areas of philosophy which people believe are done via science.
I'd say metaphysics is a pseudoscience because people assume it's akin to
physics.

Most modern psychology (not all of it, and not psychiatry) is based on Freud
and Lacan's psychoanalytic practice. This practice people generally assume to
be scientific because their health insurance covers it, but it has no
scientific basis.

I'd also say some people assume political theory to be scientific, as many
mistake it for economics and sociology which ~are~ scientific. Political
theory is not.

EDIT: Aesthetics and philosophy of mind are other areas which people
mistakenly think involve neurobiology, but they don't.

~~~
thedufer
I think you may be behind the times when it comes to psychology. Modern
psychology looks down on Freud and isn't based on it at all. As of a couple of
decades ago, parts of psychology would probably be well classified as
pseudoscience, but that isn't the case anymore.

The ~generally assume~ is an interesting bit. Dictionary definitions of the
term typically go with something more like "practices which _claim_ to be
scientific". Its not terribly fair to philosophers to call them practicers of
pseudoscience just because the layperson sees "physics" and assumes
"metaphysics" must be science.

But, then again, life isn't fair. Metaphysics _is_ a pretty misleading name.

~~~
JacksonGariety
Modern psychology looks down on Freud almost entirely because of the
advancements of Lacan in the 60s. Despite this, psychology is still ~based~ on
Freud.

You're right about the "generally assume" part. I had my definition wrong. But
I still think it pertains to psychoanalysis specifically, because Freud
definitely advertised his methods as scientific.

------
steven2012
I'm reading into this, but I would hazard a guess that it appears he plays a
lot of video games or surfs the web/blogs (he seems to have a lot to write
about games, etc), and his roommates probably see this and react negatively to
it, especially when he complains about being tired all the time. It's not
normal for good people to act like jackasses, so it feels like there's
something more to this story than just them not understanding that he has an
illness.

Out of curiosity, if there is no name for this illness he has, what sort of
treatments does he do that require 2-3 trips to the hospital per week? Is he
getting dialysis or blood transfusions?

~~~
peterevans
You're kind of proving his point, aren't you? Your default assumption is that
his roommates are probably right. What if he had crippling fibromyalgia? Or
some horrendous cancer?

> especially when he complains about being tired all the time

He never said he complains all the time. He says he _is_ tired; he did not say
he complains that he is tired all the time. So why did you immediately
conclude he must complain all the time?

See, I read the point of the post as this: when you have a disease with no
name -- no one can classify you as having a _thing_. You just have symptoms. I
read his point as being that people sympathize with those who have a disease,
but if you can't name your disease, it's almost as if you didn't have one. And
hence his roommate who decided it'd be awesome to ride their exercise bike in
his room as a form of punishment for not having a better sleep schedule. His
roommate couldn't sympathize.

Here's an exercise: you know how recent security exploits all have fun little
names? And how those exploits have all gotten fairly extensive press mentions
as a result? Do you think they would have had the same if they were left
nameless, as most exploits in the past were?

~~~
anigbrowl
When he's complaining about a disease with no name, it might be worthwhile to
provide a bit more medical background about the progress of his illness. Like
many 'woe is me' stories on the internet, this left me with a lot more
questions than answers and reading it ultimately proved to be a waste of my
time. I feel sorry for the author but found his account of problems too
incoherent to puzzle out, apart from the fact that he feels terrible and can
only work about 30 hours in a good week. Maybe he needs to apply for
disability and spend his limited uptime working on small-scale games rather
than big commercial ones involving massive workloads and crunch time etc.

~~~
sp332
The post isn't about explaining his disease. That's just a little background
info. It's not trying to defend being sick all the time, since that's really
not something he should have to do. The post is just describing what it's like
to be that sick all the time.

------
polemic
Wow, a lot of the replies here are so typical of what _genuinely sick people
experience every day_. You don't need to posit a cause, you don't need to
suggest cures and you don't need to critique his lifestyle.

The point of the article is not to try to explain all of that shit to you, but
to try to make you understand what it's like to be _that sick all the time_.
Try to take in that message first, and when you think you have the slightest
idea what it's like to live like that, _maybe_ you are then qualified to add a
response.

~~~
c23gooey
>Try to take in that message first, and when you think you have the slightest
idea what it's like to live like that, maybe you are then qualified to add a
response.

How ridiculous. Just because a person isn't suffering or doesnt have a true
understanding of the same agony as the blogger, doesn't mean they are not
allowed to offer help.

Whats so wrong with people trying to help? Should we just say - "Thanks for
the insight. Now back to my own world"

~~~
polemic
> _" Whats so wrong with people trying to help?"_

Because most of the 'help' is in the form of unsolicited advice, well-intended
as it might be, and tends to be naive, unhelpful, disheartening, demotivating
or downright insulting.

OP outlines what that feels like:

 _" These people are, in most aspects of their lives, good people. Honestly,
couldn’t recommend them enough. But where my illness is concerned, they felt
they had license to act like complete jackasses because they couldn’t
understand what I was going through."_

Sure, anyone can help, but very few of the comments on here are _helpful_.

~~~
bigtunacan
As someone with numerous debilitating diseases myself; the whole thing just
doesn't ring very true with me. It was a 6 year process of being moved from
specialist to specialist and every test you can imagine being run to
understand what was wrong with me.

During that whole time almost everyone I encountered was very sympathetic and
understanding.

It is also difficult as a patient not to be jaded. There are "patients" out
there trying to scam the system that just want some doctor to sign a
disability claim so they can collect a check without getting a job. I've met
numerous individuals where this is the case. Then I see the doctors and they
keep telling me that I should consider going on disability or find a less
stressful line of work, because of my health. They tell me that it is only a
matter of time before things get so bad I will no longer be able to make a
choice.

I have a friend that has terminal cancer who plans to work until he dies.
There are plenty of desk jobs; if this guy can sit up playing video games and
such; he can likely hold down a job.

------
Madmallard
Did you take flouroquinolone or other bacteriocidal antibiotics, or take
statins/steroids? These things are known to cause mitochondrial disorder which
can manifest in lots of ways but the predominant similarities are pain,
fatigue, and improper response to exercise (it taking a toll on you as opposed
to making you stronger).

Edit: They're also pretty much ignored/under-represented by the medical
community.

I suppose me saying "known" was somewhat misattributed because they're known
by researchers, not by doctors.

~~~
NhanH
I'm sorry, but the writer wrote a piece about how his sickness doesn't have a
name, how he is REALLY REALLY sick, to the extent of going to the hospital 3
days a week. And your first comment is to essentially try to diagnose his
problem as something (seemingly) relatively simple?

Really?

Edit: It's extremely unlikely that with his state, he hasn't known of
everything we could have suggested. And since someone is saying that I'm
appealing to authority, I'm not. I didn't mean to say that the doctor knew
best, but rather him, the writer, have done his research and knew about his
condition.

And as for whether the comment I'm replying to is "helping". That's the point
I'm trying to make. He's helping the same way as the writer's roommate is
"helping".

The point I was trying to make is that, half of the post was about how hard it
is for people outside himself to know about his condition. And to my
interpretation, it's better to just take his words. With that in mind, it
feels incredibly ironic that the first comment in the topic is essentially
someone trying to guess what's the issue. And no, I'm also not trying to help,
because that's also the point: he doesn't need my help, there is nothing I, an
internet stranger could have helped. And from the tone of the post, I wasn't
aware that he was looking for information, merely expressing his frustration.
I'm sharing my sympathy with him, and if we meet one day, I've love to buy him
a beer. As of now, I'd just take his words, and shudder when realizing there
are many type of odd disorder out there.

I realized the tone wasn't necessary, and I apologize for that.

~~~
sillysaurus3
In the book "What do you care what other people think?" there's a story where
Feynman had a good idea that his wife might be suffering from tuberculosis,
but he restrained himself from saying anything because the symptoms were so
simple and obvious that he figured the doctors had already ruled out
tuberculosis as a possibility. His wife died sometime later because she was
diagnosed and treated for it too late.

I don't think relying on professionals to be perfect is a good idea.

~~~
hga
That doesn't match my memory of the book, nor Wikipedia's short mention that
when they married they knew she had it and the prognosis wasn't great. More
significantly, she died in 1945, when the first drug that could touch
tuberculosis was still in the very early experimental stage.

~~~
sillysaurus3
I remember it vividly. The story was about a doctor running up to another
doctor, in front of Feynman's wife and her family, and was excited to the
point of being rude, asking things like "Did you check for X?!" where X was a
symptom of tuberculosis that Feynman had also noticed. The doctor was
admonished for his behavior and for "making the patient feel uncomfortable"
and was brushed off, even though he was on the right track and would have
diagnosed the tuberculosis sooner. Feynman could have stepped in and said
"Well, actually, I also noticed X," but the social pressures of the situation
persuaded him to stay quiet, which turned out to be regrettable.

It probably isn't in Wikipedia because it isn't in Surely You're Joking, which
is freely available online, whereas you have to buy the other book which has
this story. But the story is definitely in there.

EDIT: Here's the story:
[http://pastebin.com/NeP4Ka70](http://pastebin.com/NeP4Ka70)

Some summary:

...

As soon as I hear about [the disease] I go down to the library at Princeton
and look up lymphatic diseases, and find “Swelling of the Lymphatic Glands.
(1) Tuberculosis of the lymphatic glands. This is very easy to diagnose…”—so I
figure this isn’t what Arlene has, because the doctors are having trouble
trying to figure it out.

...

The county hospital gave Arlene all sorts of tests and X-ray treatments for
this “Hodgkin’s disease—?” and there were special meetings to discuss this
peculiar case. I remember waiting for her outside, in the hall. When the
meeting was over, the nurse wheeled her out in a wheelchair. All of a sudden a
little guy comes running out of the meeting room and catches up with us. “Tell
me,” he says, out of breath, “do you spit up blood? Have you ever coughed up
blood?” The nurse says, “Go away! Go away! What kind of thing is that to ask
of a patient!”—and brushes him away. Then she turned to us and said, “That man
is a doctor from the neighborhood who comes to the meetings and is always
making trouble. That’s not the kind of thing to ask of a patient!” I didn’t
catch on. The doctor was checking a certain possibility, and if I had been
smart, I would have asked him what it was.

...

[A long time passes, and Arlene's condition worsens. The doctors finally
perform a biopsy to figure out what's wrong.]

...

When I got to Arlene's house, she showed me the report. It said, “Biopsy shows
tuberculosis of the lymphatic gland.” That really got me. I mean, that was the
first goddamn thing on the list! I passed it by, because the book said it was
easy to diagnose, and because the doctors were having so much trouble trying
to figure out what it was. I assumed they had checked the obvious case. And it
was the obvious case: the man who had come running out of the meeting room
asking “Do you spit up blood?” had the right idea. He knew what it probably
was!

I felt like a jerk, because I had passed over the obvious possibility by using
circumstantial evidence—which isn’t any good—and by assuming the doctors were
more intelligent than they were. Otherwise, I would have suggested it right
off, and perhaps the doctor would have diagnosed Arlene’s disease way back
then as “tuberculosis of the lymphatic gland—?” I was a dope. I’ve learned,
since then.

------
AReallyGoodName
What's the best way to deal with something like this as a friend of someone
with something remarkably similar?

I have a close friend who's always going to see specialists with some ailment
or another. One of the things he has is low magnesium and zinc just like this
author. He's also suffered from bouts of unexplained amnesia (is that where
the author got the name for his blog from? If so maybe they actually have the
same thing!?). His sleep schedule is completely screwed to the extent that i
hardly see him and he never gets sunlight. He has serotonin and dopamine
issues. I actually checked the blog in detail to make sure it's not the same
person. It isn't. Just a weird coincidence.

He's never been diagnosed with anything specific either.

Like the friends of this guy in this story I honestly do suspect he is lazy. I
see him playing 100+ hours a week on his steam profile and he plays more than
just steam games. He's currently well into his 30's and he's missing out on
life.

I actually don't know what to do. I honestly feel that tough love would help
him more than anything. In this article this guy says his friends keep him up
saying “You need to force yourself to have a better sleep schedule.”. I'm
tempted to do the same for my friend to try and get him into a sensible sleep
schedule. I guess that's wrong but i can completely understand it.

Leaving it at status quo is unacceptable in my opinion. Even with a disability
he's still not making the most of life - the ridiculous sleep schedule where
he never see's the sun has to stop. Giving him time to sort his shit out
doesn't work. He's been like that for 15 years now.

~~~
javajosh
How another person lives his life is _fundamentally_ his decision, and it is
not your responsibility to fix him. Your frustration with him is _your_
problem, not his. At first blush, I would recommend either accept him or walk
away, for your benefit and his.

~~~
c23gooey
Sounds a bit harsh, i think the OP is looking for advice on how to deal with
it. Saying accept it or walk away is not really adding to the conversation.

My suggestion would be to start to talk to your friend about how you feel
about his/her situation. Try and get an understanding of just how they are
feeling.

Dont just come into a conversation with all your advice ready to go because it
will make your friend back off.

Be prepared to spend sometime to get to understand the underlying causes
behind his/her need to shut down and not live life.

There are probably some deep seated fears and stresses which are causing
him/her to be this way.

Walking away and just turning a blind eye to them is not going to help anyone.

------
cpncrunch
It sounds like you actually have Chronic Fatigue Syndrome - everything you say
is very typical of CFS. I actually suffered from CFS myself, but have now
fully recovered - I run my own business, and I'm a private pilot as well.

CFS is very treatable and you can recover from it. Unfortunately there is a
lot of BS and quackery out there, making it difficult for patients to get the
right information. Feel free to email me at cpncrunchhn@gmail.com.

~~~
kansface
Is racking pain characteristic of CFS?

~~~
cpncrunch
Yes, it can be. Some people have a lot of pain, others have none. The term ME
tends to be used when pain is present. Also fibromyalgia overlaps to a very
large extent with CFS, and pain is one of its main symptoms.

The problem is that all patients have slightly different symptoms and there is
no definitive test as yet, so it makes it difficult to diagnose.

------
freehunter
I'm not sure I understand. Any of it... How can he be sick for nine years and
the doctors don't have a name for what's wrong with him? Is it one medical
condition, or does he suffer from depression and poor liver function and
malabsorption? What kind of government aid is he seeking, and why is he being
denied (as opposed to studied to find out what's wrong)?

Lastly, who is he? I googled Forgot Amnesia and didn't find anything of note.
Not that his identity has anything to do with his illness or his struggle, but
it would help put some identity and background to the story. Is he well known?
Is he rich and famous? Is he poor and struggling? He says he's a writer and an
indie dev, has he done anything I would know of, or does he have a storefront
where I could buy something to help his finances?

For a story titled "Read all about it", it doesn't really say much. I feel
like I want to help, but now I just feel bad for someone I don't know and
can't do anything about.

~~~
whafro
I made a more detailed comment downthread, but in the pediatric rare disease
world, ten years is generally considered a fairly typical amount of time
before one can finally get a diagnosis, and that's for diagnoses that are
actually known/identifiable/understood.

The easiest way to explain this is that doctors typically don't want to
diagnose life-long conditions if they've never seen them before. So your
family doctor will send you to an internist, who will send you to an internist
at the local academic medical center, who sends you to three specialists at
the same medical center, who don't know what it is. Then you get a referral to
someone in another city who specializes in something someone thinks it might
be – that guy has diagnosed 10 people with this rare disease. You fly out, and
he says "nope, you're not it."

Wash, rinse, cry, repeat.

------
ilaksh
I also have pretty significant health issues, not anywhere near as bad as this
person, but life-impacting. People do have a tendency to just think you are
lazy, even after you have explained your condition to them. For example,
sometimes I have a lot of trouble getting up early or even at a normal time.
People would tell me I need to get to bed earlier when I actually went to bed
at the exact same time as them and woke up feeling exhausted and had to go
back to sleep.

There are lots of things that cause fatigue and other issues that can be
practically or actually debilitating but either don't have a diagnosis or
don't have a diagnosis that sounds bad enough, and people decide to blame the
victim.

Part of that might be giving too much credit to doctors.

------
divoxx
If you're looking for a job, I'd give ThoughtWorks
([http://www.thoughtworks.com/](http://www.thoughtworks.com/)) a try. They are
a very unique company, very open and very inclusive.

------
ff10
About the issue with it hasn't got a name: wouldn't be a human biologist be
interested in researching this thing? Plus getting his or her name to name the
disease?

~~~
whafro
I know more about the pediatric cases, but fwiw... There are TONS of
'conditions' that don't have a name (quotes only because that may not always
be the right term).

Sometimes it's not that simple – sometimes it's a matter of doctors trying to
see if it's actually an unusual presentation of an existing condition. That's
the usual focus for the first few years of dealing with a rare condition: the
search for a diagnosis. You may have a dozen symptoms, and a given condition
may overlap with eight of them, and with six of another, and with ten of
another, but something stands in the way of getting a diagnosis.

Eventually, you may have exhausted your options for diagnoses. None of the
existing conditions fit what you have, for one reason or another. At that
point, the best you can hope for is to find other people who match what you
have. Get a small cohort together, and maybe the NIH will fund a grant through
the Undiagnosed Diseases Program or something.

It's long, uncertain, and frustrating. We're working on stuff to help folks
like these (though kids, mostly) over at Kinsights, and it's heart-wrenching
to hear about and watch this process unfold.

------
bbcbasic
It is sickening that a talented guy can't get a job just because he needs to
work part time to manage a disease.

~~~
teacup50
Really? Sickening? There are any number of candidates available that _won 't_
require special consideration to manage a disease, so why should someone
solely take on the charity burden of giving _this_ fellow a job?

~~~
bbcbasic
No charity is required. Infact it is profitable to hire this guy. What is
required is getting rid of pointless constraints.

Part time? You get a talented developer for 30 hours a week, paying the same
hourly rate as everyone else.

Working from home? Depending on the role he may be even more productive than
those in the office. I have just two more words to say about it: 37 Signals.

~~~
teacup50
> _No charity is required. Infact it is profitable to hire this guy. What is
> required is getting rid of pointless constraints._

Pointless constraints like being a reliable employee?

> _Part time? You get a talented developer for 30 hours a week, paying the
> same hourly rate as everyone else._

Why would you want a part time engineer if you can have an (at least!) equally
talented full time engineer?

> _Working from home? Depending on the role he may be even more productive
> than those in the office.

If you want an employee that can work from home, there are plenty of them that
won't be sick half the time.

> _I have just two more words to say about it: 37 Signals.*

What does 37 Signals have to do with anything? There's _nothing_ to indicate
that cargo culting a small aspect of their company's working model has
_anything_ to do with creating a similar outcome.

~~~
bbcbasic
Who said he is unreliable? Maybe he is, in which case that is a different
matter.

I find that 'work from home' jobs tend to pay less and therein lies the
balance. The advantage to the employer is to pay less for the employee and
save on office space. The advantage to the employee is obviously the
flexibility that gives them and not needing to commute.

30 hours is part time but it isn't like asking for 10 hours a week. It is
almost full time (40hours). I hear a lot on HN and other places online about
American companies requiring lots of hours of their developers even though
they are supposed to work 40hours. So that could be the difference we are
seeing. In Europe/Australia this is not expected generally, except in certain
industries like Finance.

37 signals are successful despite letting people work from home. I had a
previous employer who isn't famous or anything but had many developers work
from other countries with time zone challenges. It can be done.

In a pure, zero-charity, capitalist world there should still be jobs for
people with diseases like this who can work. They have something to offer and
the market will meet a fair price on it. It may be a lower price than a fit
person, but there could still be a beneficial situation to both the employer
and the employee.

------
TeMPOraL
Maybe folks at MetaMed could be of some help? The company goal is to help
people with rare&hard to diagnose problems by focusing a team of specialized
researches on sifting through available medical knowledge.

------
bigtunacan
Ok, guess this is share and tell day...

When I read this article I just think of someone that seems to be keeping
themselves down.

But the truth of the matter is that many people that are very sick and in a
shit load of pain or even dying are still out busting their asses on a daily
basis doing their work come hell or high water.

I'm not saying this from the perspective of some outsider, I am one of those
people; I'm one medically screwed up piece of work.

Here is a list of all of the various diseases/syndromes I have been actually
medically diagnosed with.

Type 1 Diabetes

Stiff person syndrome

Abnormal antibody syndrome

Benign fasciculation cramp syndrome

(This one is really a load of fun. Basically this means I have severe muscle
spasms all over my body; sometimes so bad that I will fall or injure myself
and flop around looking like someone with epilepsy. Unlike epilepsy though,
this is not a seizure, so when it happens I'm awake for the whole damn thing.
Is a god damn riot. Seriously wish I could whip this shit out on demand I'd be
the life of the party. The "benign" part just means "this one's not fatal".)

Alopecia

Hashimoto's disease

Asthma

Autoimmune arthritis

Autoimmune polyglandular syndrome, Type 1

My kitchen cabinet looks like a pharmacy because I'm on so many damn drugs,
between the muscle relaxants, pain killers, insulin, and more. I'm on the top
shelf stuff, the kinds of prescriptions where the doctor still fills out the
prescription on real paper because it's required by law since this shit is so
powerful and so addictive.

Add to this I have health problems that can't be accounted for by the things
the doctors have been able to pin down. Like the fact that I can't stand up to
fast or I'll pass out; they know it's because my blood pressure drops way too
low, but they still can't figure out why. Or the fact that I sometimes suffer
temporary paralysis. Imagine waking up and not being able to get up; I'm not
talking about where your arm fell asleep because laid on it and cut off the
circulation. I'm talking about waking up and laying there for an hour unable
to move or even speak; trying to moan or make some kind of noise until my wife
finally wakes up so she can lift me out of bed and move my limbs around until
they start working again.

I've had doctors visits where the doctor told me it was a miracle I hadn't
been brought in on a stretcher, and visits where they've told me that (and I'm
going to have to paraphrase here), as bad as I am they just don't know how
much longer I have.

On my good days I'm on muscle relaxants and pain killers and I still am in
horrible pain throughout my whole body. There is the pain that is always there
and then there are the shootings pains that double me over, or my muscles
locking up to where I can't move. And those are the good days; where I get my
ass out of bed and go to work anyway. Every 3 months like clockwork I go back
in to the doctor and they look me over and run tests and occasionally they
will bring in some young new doctor and tell them how "interesting" of a
patient I am; and just in case you are somehow unsure you don't ever want to
be an "interesting" patient.

On my really bad days I call in sick to work and then I take enough pain
killers and muscle relaxants to knock myself unconscious and I just pray for
the pain to get a little better.

Everyday I wake up, I breathe a little sigh of relief that I lived another
day. Then I get off my ass and get back in the game, because today really
might just be my last.

------
michaelochurch
As a person with over a decade of life (16-28) characterized by health issues,
this resonates. It can get better. I've been mostly normal for 3 years and I'm
well-treated, although YC/HN-style startups are out of the question (can't
risk going without insurance).

Health problems are like many natural disasters (e.g. hurricanes, earthquakes,
heat waves) where it's not the event itself that kills people and causes
suffering so much as _human_ failures: looting, under-maintained
infrastructure, incompetence by trusted service providers and malfeasance by
insurers and various unscrupulous opportunists.

When you're sick, the health problem itself is challenging. The continuing
onslaught of people failing you (which you'll frequently blame yourself for,
especially if it's not clear what's wrong with you) or exploiting your (no
matter how intermittent) weakness is demoralizing.

Now that I'm well I fight back against human failure and indecency and I will
not stop.

------
morphir
you might want to checkout out
[https://www.youtube.com/watch?v=EkfnUm7uH7o](https://www.youtube.com/watch?v=EkfnUm7uH7o)

(How to Create a Healthy Electrical Environment in Our Technology-Driven
World)

