I've had insulin dependent diabetes since 1967. For close to twenty
years I made little effort to find out more about my disease -- I took
my shot every day, sometimes checked my urine sugar (the only
self-monitoring available then), tried not to leave myself stranded
without food, but not much more. I finally started going to medical
libraries to read and learn more about ten years ago, stimulated in
part by the availability of home blood glucose monitoring and in part
by the feeling that I could be a good bit happier (in the short run)
and healthier (in the long run) with more knowledge and different
treatment. I tend to prefer to understand and manage myself rather than
asking doctors to do it for me, so off to the libraries I went.
I learned a lot and helped myself. But of course I also learned a lot
that might help other people too, those who haven't the time or the
inclination for that type of study. But I almost never got the chance
to pass on any of what I had learned (and continued to learn). One just
doesn't get into the situation for that kind of thing very often, and
I'd never hung out with others who have diabetes -- not much common
ground there for most of my real interests. For a long time I felt
quite frustrated with this situation.
I got email and Usenet access in 1990. I was active in a couple of
newsgroups, notably rec.backcountry, for quite a while. But oddly, I
never connected the net with my desire to share my knowledge of
diabetes -- never wondered whether there was a diabetes newsgroup
(there wasn't) or looked for a diabetes mailing list (one did exist).
So I was actually surprised, albeit pleasantly, when Steve Kirchoefer
proposed misc.health.diabetes in early 1993.
I was an active participant in mhd from the beginning in April 1993 --
and seldom have time now to even read the newsgroups I'd participated
in previously. After a couple of months, Steve suggested gathering
volunteers to make specific contributions: reviews of research
literature, an FAQ, etc (I can't recall the rest of his list right
now). I've never been much of an organizer, so I assumed someone else
would pick up the FAQ and that I'd contribute. I did start writing
responses on the newsgroup with the idea that they might eventually
become part of an FAQ, and I starting dropping articles containing
questions into a mailbox for later sorting.
A few months went by with no one organizing an FAQ. Finally, I realized
that I had nearly enough material for a first cut. One weekend in
November 1993, I sat down, sorted the questions, made a list, pasted
together quite a few of the articles I'd written, wrote several more,
and posted the first draft -- about 35K. The rest, as they say far too
often, is history. I continued writing answers and putting them into
the FAQ. It's well over 100K now. I've had a few contributions from
others, but still about 90% of the FAQ is my writing. I have a long
list of topics I'd like to add, some of which I can start writing on
anytime I have time, some of which require quite a bit of research.
No one has expressed an interest in taking it over or wondered why I did
it rather than someone else -- well, not that I know of anyway. Really,
it was just because I was the one who responded to Steve's prodding.
Comments on the FAQ are fairly rare, probably reflecting the fact that
I've always taken a studiously neutral position on controversial issues
in the FAQ, or omitted them entirely, even when my opinion is well
known otherwise. In fact, I really wish I could get more comments, and
even have a plea to that effect in the FAQ. It takes a lot of inference
to know that people are using it and how they are using it, but I'm
convinced they are using it. Reading it, sharing it with friends and
family, printing copies for newly diagnosed friends and relatives, even
printing it out to show to their doctors and nurses. Uses which I
didn't anticipate but which have turned out to be more valuable than
the traditional role of diverting some of the questions from the
newsgroup. Just today, my wife printed a copy for the man repairing our
air conditioner, whose 15-year-old son has diabetes. And I think that
kid will be online before long, too.
I knew from the start that one that I wanted to do on mhd was to help
set the tone, to try to build a community. Naturally the newsgroup
hasn't been everything that I'd like, but I think I've had a
significant positive effect on it. (My wife, who posts frequently as
the spouse of a diabetic, has also had a strong effect.) I've carried
this goal with me in the FAQ. One of the few times the FAQ has been
quoted directly on the newsgroup was by someone saying "please don't
chastise me for discussing X, it says in the FAQ that's OK". So at
least one person has read that section ...
So the two things I've really derived from doing the diabetes FAQ are
the satisfaction of helping other people with information and support,
and helping develop the nature of the newsgroup. I'm probably unlike
the vast majority of authors and maintainers FAQs (but probably like
many of those with health-related FAQs) in that my involvement in the
topic stems more from necessity than from intrinsic interest. Take away
my disease, and my interest in the disease would pretty much disappear
too. Yet the satisfactions of aid and community are very real.
Actually that's true of the vast majority of people participating in
mhd. Only a few, perhaps 5% or less, are medical people with a bona
fide professional interest in diabetes -- and a lot of those are
themselves patients as well as providers. This may be one reason there
isn't a groundswell of people wanting to take over the FAQ or provide
articles for it. We are really there out of necessity. The kind of
interest that drives people to high levels of participation is
generally subordinate to that necessity.
There's also some very real interest in seeing the backside of medical
practice, finding out about aspects of individual attitude toward
disease and health that the medical profession doesn't address well.
People express attitudes, and ask about problems, on the net that
aren't often discussed in medical textbooks. I think I'm in a position
that I could offer a lot to parts of the medical profession. That level
of helping people is a real interest of mine. Trouble is, I don't know
how to take the next step. If this sounds too vague, I agree. That's
the problem.
In answer to questions others have raised: it's gotten me some very
small recognition in the field. For an article in Diabetes Forecast (a
mass audience magazine) about online resources for diabetics, Shauna
Roberts interviewed me (along with many others) and mentioned my name.
I'd rather have written the article than been interviewed for it ...
but it's a start. I know that quite a few medical professionals have
read my FAQ, but I haven't received any substantial feedback from any.
Time: from two hours a month to 20 hours a week. As much as I can. As I
said, I have a long list of things I'd like to add, so it's a matter of
how much time I can make available rather than of how much needs to be
done. At least there's little to go out of date, so if I can't do much
for a few months, nothing goes stale. And on the other side, due to the
nature of the topic I never have any sense of wasting my time or of
spending too much time. I have plenty of reason to believe the time is
well spent. Even a small part of this FAQ, seen by the right person and
the right time, could help a life, sometimes enormously, possibly even
save a life. I haven't the slightest regret over the time I've put in.
Edward Reid
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