

Ask HN: Prion Disease Fear? - sfb123

I did post this on reddit, but because I posted it in a state of panic, I ended up writing something rather embarrassing, so I'd like a second go at a different community.<p>Basically, for the past 4 months, I've been terrified of getting a prion disease. Too many things about them seem so brutal. How they start off as psychiatric problems, how they only affect the brain, how the death is fairly long, and how they are immune to conventional steralization all terrify me.<p>But there's one thing that truly stands out in fear: insomnia. Prion diseases many times cause an actual physical inability to sleep, and this drives me up the wall. How can I fall asleep, knowing that I may not due to these (1 in a million rare) brain diseases?<p>So far, I don't know of any other kind disease that does this, so it's fairly unique to them. I've been seeing a psychotherapist, but I still have this underlying fear. I'm thinking of killing myself, since that's looks like the only way I can rest assured that I'll die a comparatively peaceful death.<p>Why shouldn't I fear them? Do they scare you? Also, would a death by sleep deprivation not even be as bad as I'd imagine/is the disease not that painful for the sufferer?
======
mechanical_fish
You need to speak about this some more with your therapist, or with a
different therapist if you want a second opinion. You should do so right away.
Pick up the phone! That is what these counselors are there for.

The rest of us can't help very much. This is the Internet. It's really good
for reciting facts, but the facts of the matter have little or nothing to do
with your fear. Fear isn't a thing you can necessarily explain away, as you
probably know better than anyone. For example, you already know, consciously,
that diseases like CJD are incredibly rare, which is to say: _You do not have
classic CJD, and you're not going to get it._ [1] And yet here you are.

You need to learn, with the help of coaches, how to recognize your fear and
adopt practical strategies for dealing with it when it arises. You might also
derive great benefit from certain medications. If your fear is endangering
your happiness or your life it is a serious problem, but it is a problem for a
psychiatrist or a psychologist, not for hackers on a message board.

\---

[1] Yeah, I _could_ be wrong. But it is more likely that I will die in an auto
accident within the next week than that I am wrong. [2]

[2] 1.2 fatalities per 100 million vehicle miles traveled (<http://www-
nrd.nhtsa.dot.gov/Pubs/811207.PDF>), assume 300 miles traveled per week => my
chance of death each week is 3.2 in 1 million. According to the CDC "The risk
of CJD increases with age, and in persons aged over 50 years of age, the
annual rate is approximately 3.4 cases per million."
(<http://www.cdc.gov/ncidod/dvrd/cjd/index.htm>)

------
wakeboarder3780
Well, I'm not really sure where to start. For one it's good that you're
seeking counseling, hopefully this will help things. That being said, there
are others like you. While I am not one of them, there are people in the world
that are afraid of all types of things (even their own shadow - sciophobia ).
So, you can at least seek comfort in the fact that you are surely not alone.

That being said there are plenty of horrible ways to die in life. I wouldn't
even care to venture a guess in how many horrible ways there are to go. The
fact of the matter is, the odds are ridiculous at best that you will dye in a
horrible way. The average person is going to meet their maker from a much less
crazy event - car crash, heart disease, cancer. Do you know anyone in your
family or friends that died from the disease you fear? I bet not. How did they
die? Much more common ways. However, seeing as how you already posted the odds
I know you know this.

The fact of the matter is that you're thinking irrationally. Hopefully the
fact that you are likely intelligent and that you already know the odds are
ridiculous at best that you would get a disease like this, yet you are still
worrying about it tells you that you are thinking irrationally.

I think by realizing this you'll be one step up in the game. I think the real
crux of your problem is to somehow stop thinking irrationally. Unfortunately
this is where my advice ends because I am nothing but a logical thinker. I
think about death occasionally but only worry that I will die before I've done
enough good in the world.

I think you are doing a good thing by seeking counseling and I think your main
goal should be on trying to stop thinking irrationally. Hopefully some of what
i said calms you down at least a bit.

One last note - suicide will not only end your life but crush anyone else's
life that you are a part of. It is a weak, selfish thing to do. I am a firm
believer that people are put here to do good things in the world and if you
drop yourself from the equation you're hurting the odds of getting a higher
percentage of do-gooders out there. If you care even slightly about your
family or friends you will set aside suicide as a possible option and start
looking at changing things for yourself.

Also, you may want to remove that from your post as you're likely going to
make people think you're just trolling for emotional responses. Since I feel
like you may be trolling this will be my only post.

If you aren't trolling I sincerely wish you good luck with your burden and
offer you my thoughts from a rational standpoint - I think you _can_ beat what
you're dealing with if you stick with it.

~~~
sfb123
I wish I had access to a computer earlier, since those are at many times my
true emotions, so no, I'm not trying to fish for an emotional response, and
I'm really aware that my fear is fundamentally irrational. But, after 5 months
of having a purely joyless and grim existence due to constant worry, it
becomes a very realistic and entertaining thought.

I guess I shouldn't be asking the Internet, but I've exhausted a lot of my
real life resources, and sometimes it seems like everytime I make progress I
end up taking several steps backwards; I figured it was as good as anything at
this point, really.

~~~
wakeboarder3780
If this is the way you feel I _do_ highly suggest focusing on counseling,
seeking an additional counselor for a second opinion, possibly seeking
medication (things that can make you feel less depressed, anxious, etc).

Unfortunately as others have stated the majority of hackers are going to know
logical responses. Since yours is that of irrational fear, it becomes
difficult for anyone but a trained professional to help you.

Unfortunately I don't think this is an avenue except for people that wish it
to be, but have you considered reading scripture? Sounds a little crazy but
having faith can really change your perception on things. I don't think it's
necessary to have a positive outlook on life, but it might help you to gain
one. If faith means anything to you the story of job comes to mind.

Some people have a knee-jerk reaction to the suggestion of religion so if I've
offended you in any way I apologize. I hope you do focus on your counseling
and make an effort to focus on friendship or perhaps pursue finding people
like you. It may help an order of magnitude just to be able to converse people
battling issues similar to yours. I'm not sure how much this forum is
frequented but I bet if you dug hard enough you could find something similar
to this that may help: <http://www.phobias-
help.com/forum/forumdisplay.php?f=21>

------
Tangurena
It used to scare me, but only because my father's younger brother died from
vCJD. He died from it before the Europeans had their "mad cow" outbreak. And
at the time it was so rare in the US that no one really understood it (and he
died before there were non-destructive tests for it). It is a disease related
to "scrapie" which cattle and sheep can get (he took care of the sheep that
his daughters got 4H ribbons for showing in fairs). AIDS just kills you. vCJD
destroys what it means to be human before it kills you.

We all get terrified of things we can't control, which is why more people are
afraid of flying, even though far more people die in traffic accidents every
year. When you're driving, you _feel_ in control, versus when you're a
passenger in an airplane, you have zero control over anything. That imbalance
leads to why there are classes and shrinks to help get over the fear of
flying, but there aren't any folks with fear of driving.

The vast majority of prion diseases come from our industrial agriculture. So
if you're afraid, then you really need to avoid beef. The USDA _only_ permits
BSE testing on visibly symptomatic animals, and has banned 100% testing which
many countries are only willing to accept. It takes 4-5 years for an infected
animal to get the visible symptoms, and most cattle are slaughtered before
they hit 2 years old. And the bush administration reduced the number of BSE
inspectors by 90%. And you probably should avoid hunting as deer and elk can
get a related illness called chronic wasting disease.

Finally, there were some genetic studies and it appears that if you have 2
copies of some gene, then you're suceptible to getting vCJD if exposed to the
prions (and if you're going to get it, you'll get symptoms in 2-3 years after
exposure). If you have 1 copy of the gene, if exposed to the prions, and if
you're going to get it, then you'd get symptoms in 15-30 years. The folks
doing the research weren't sure, but if you had 0 copies of the gene, then
thought you probably couldn't get infected.

------
iterationx
You're going to die at some point, why fear this form of death over another
form?

------
gojomo
It sounds as if you've developed an irrational obsession and phobia about this
disease.

Make sure you talk to your psychotherapist and trusted friends/family about
the level of distress this is causing you. They can help restore rational
balance to your thought, and may help you recognize other contributing causes
for your fearful mood -- other emotional stresses, substance/medication
issues, etc. -- that you can address one by one.

