

Ask HN:  Dealing with controversy - Mz

I actually hate arguing with people, but I am constantly mired in controversy.  The super short version:  I have done something that is supposed to be "impossible", so I fairly often get personally attacked for trying to share information with other people with the intention of helping them.<p>In some ways, I'm "sensitive".  Yes, I'm "sensitive" in terms of "not liking getting attacked", but I think the other side of it is I am just very aware of even relatively small things that are actually a form of hostility that most people wouldn't notice.  On the one hand, this is often a subjectively very un-fun awareness. On the other hand, it has allowed me to accomplish something most people couldn't accomplish, and that is making it possible to discuss new ideas that most people can't effectively introduce.  This turns me into the lightening rod for such controversies, I think in part because it's clear to a lot of people that if they can shut ME up, they can close the uncomfortable topic altogether.  But I think another part of it is that publicly it gives the appearance that I am the <i>cause</i> of the whole thing rather than that I open the door for latent demand/interest which has been suppressed.<p>This is relevant to my goals as far as websites and such because the only way there will be an audience is if it becomes possible to have such conversations.  Otherwise, I am merely the Lunatic Fringe and all too easy to ignore.<p>Any thoughts?
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pbhjpbhj
Whatever your method is have you successfully shared it with anyone. Are the
doctors concerned that you had a specifc form (atypical!) and that those with
some other form will be tempted to avoid medication to their own detriment.
How ahve you been sharing your info. Is there some way you could persuade a
medical professional to do a study on you to see how your CF has progressed
and whether the initial diagnosis was sound so as to determine if a new
treatment based on your modus can be achieved?

~~~
Mz
I have a website where I share info as best I can:
<http://www.healthgazelle.com> And I participate in discussions in online
forums. EDIT: And I joined HackerNews because I concluded that I need to learn
a programming language and write a simulation to overcome the information gap
between my mental model and current mental models.

"Atypical" is not a specific form per se. It is a term used to describe
diagnoses that fall outside of "classical" symptoms/experiences. In recent
years, more mutations are being identified and generally milder expressions
are being recognized as still causing the same general profile of problems,
but to a usually less severe degree. My mutations and my sons mutations have
not been identified, in part because my doctor's request for a more
comprehensive test was denied by my insurance company. (This is one of the
points used to attack me and say I don't "really" have CF -- never mind that I
spent about a year at death's door and came back from that.)

I have had a few people try some of my suggestions and report good results.
Two of the most dramatic: Someone with an antibiotic resistant infection went
from testing as sensitive to 7 drugs to testing sensitive to 15 drugs in just
3 months. He also generally feels better, sleeps better, etc. In another case,
a mom with a young teen whose lungs were in such bad shape they were talking
about listing her for transplant began using some of my suggestions. About a
week later, her child was so dramatically improved they apparently weren't
discussing listing her anymore. (I have had updates from the first person but
not the second one, so that may no longer be true.) Her doctor did express
interest into looking into one of the supplements I had suggested.

Most research that I know for treating CF is drug research. I have gotten off
all drugs. Most research is funded by drug companies. At the moment, I really
don't see doing any studies or talking anyone in the establishment into being
interested in what I am doing. I believe the top-down approach to treatment
which is the current norm is part of the problem. So I believe that the
solution requires a grass-roots movement, not more edicts from on high.

------
parse_tree
What did you do that was supposed to be "impossible"?

What do you mean by "attacked"? (Phyiscally?)

"Controversies"?

The whole thing is very vague. :-)

~~~
Mz
Ooh, I was intentionally being vague, cuz I was hoping to avoid getting into
it here. :-D

I was diagnosed with "atypical cystic fibrosis" in May 2001. I was extremely
ill at the time. I had been bedridden for 3 1/2 months earlier that year. My
doctor told me "people like you don't get well, symptom management is the name
of the game". My oldest son ended up with the same diagnosis and had not been
on antibiotics for over 3 years at the time that he and I were diagnosed. So I
just couldn't accept the pronouncement that I should simply accept a slow,
wasting death as my only possible lot in life.

I am currently drug free. I got off the last of my medication in early summer
this year. I have not been on antibiotics in close to 6 years. I got off
digestive enzymes (that I am supposed to need "for life") a little over three
years ago. I am well enough to work a full time job for the first time in my
life. I live without a car (in part because what I've done has been fairly
expensive and not covered by insurance, so it all came out of my pocket and my
pockets aren't deep). With living without a car, I do quite a lot of walking
as part of my lifestyle -- something I'm probably supposed to be too sick to
pull off....etc.

Attacked: No physical attacks (so far). I have had someone imply that I am a
neglectful mom because my adult son with CF has chosen to not see a doctor
since he turned 18. The fact that he is healthy is apparently irrelevant. If
you have CF, you are supposed to get checked several times a year. The fact
that we were diagnosed late in life and so for most of our lives went to the
doctor only when sick (like normal people do) and we aren't sick right now is
apparently no excuse for such heinous behavior.

I have had people imply I am a charlatan, an attention-monger, have
Munchhausen. I have had people accuse me of being up to no good because there
are a few ads on my website, so clearly I am a snake-oil salesman as anyone
trying to make money off of health information is not to be trusted. (These
same folks routinely say you need to run everything past your doctor. It seems
lost on them that their doctor makes a lot more money than I do and might also
be subject to conflict of interest.) I have had someone imply that my son is
the product of an incestuous relationship. I have had people imply that I
fast-talked some doctor into signing off on a diagnosis of CF for no real
reason...and similar.

I've seen controversy before. I used to go down in flames routinely on
parenting and homeschooling lists, where, on the one hand, I was quite
"popular" (or at least a vocal minority liked my ideas) and, on the other
hand, I tended to be a lightening rod in part because I did a lot of things
that didn't agree with the norm -- much as I still do in terms of my health.
However, at the time, I was also doped to the gills, in constant excruciating
pain, had horrible insomnia and was simply very ill. I guess I had fantasies
that when I stopped being doped up, in pain and very ill, all this crap would
go away. I do cope better with it and I manage to generally not put out fires
with gasoline these days <grin>, but I remain at the eye of the storm. It's
really gotten to be quite tiresome. Sigh.

Thanks for engaging me in conversation.

~~~
parse_tree
Thanks for elaborating.

I strongly recommend you find a trusted friend/family member/mentor/etc. to
talk with about your concerns. It's really difficult to get a handle on a
situation as complex as what you've described without knowing you personally.
So I can't really say anymore than that.

But please do take my advice. I wish you well. :)

~~~
Mz
I do have some supportive friends and family. I had really hoped this would be
a general conversation about how people cope with controversy in dealing with
"the public", whether it's a forum or your own website. That's part of why I
didn't want to go into specifics in my opening post. I really don't think
anyone can tell me what to do about my specific situation. I was hoping people
would tell me what they have found helpful in dealing with their own
controversies. I think that would be both more helpful to me and of more
general interest to the audience here. My very specific niche worries are
unlikely to be anything anyone here can really relate to.

But thanks for your concern.

