SS-L email list for medical information
The Sjogren's Syndrome email list (SS-L)
is a moderated list subscribed to by hundreds of
Sjogren's patients and professionals worldwide.
The main focus of this list is informational and medical. For a
more sociable, support-oriented list, see TalkSjo.
"If anyone had told me before
I developed a chronic illness that patients have to be their own
advocates, researchers, and decision-makers in the medical arena, I
wouldn't have believed them!" -- Katharine Morland Hammitt, President, Sjogren's Syndrome Foundation.
This quote from an SS-L message makes an important point: Sjogren's Syndrome is not a
condition that you can get somebody else to take care of for you. If
you want the best quality of life with Sjogren's, you are going to have
to take initiative yourself.
To take that initiative, information is essential -- much more information
than you are likely to hear, or likely to be able to absorb, during
a doctor's appointment.
The base of your information can come from books (notably, the
Sjogren's Syndrome Handbook),
but for the most current information, and for the most detailed information,
nothing works better than the Sjogren's Syndrome email list SS-L.
Mechanics of SS-L
Using SS-L effectively for your benefit
SS-L focuses on sharing information about our disease.
Discussion can be practical, theoretical, medical, emotional,
but is always related to Sjogren's Syndrome.
For a looser, more sociable discussion amongst Sjogren's patients, see TalkSjo.
Sjogren's Syndrome: A Guide for the Patient, discussing
patient support groups in general, has some interesting advice:
"... approach patient support groups with an open mind as if you were
competitively shopping for an important item. Whether you belong to a support group or
not, it is important to surround yourself with people who believe in "wellness" behavior
rather than with individuals who are chronic complainers."
Practical methods for tailoring SS-L to your needs
Members can tailor their involvement with the list
based on the time and interest they have available. It's easy
to instruct the mailing list server to suspend the daily message traffic.
It's also easy after such a "vacation" to view
the mail that was missed during the vacation period, and thus to catch
up on the news. Some SS-L members are finding that what works best for them
is to remain in the "vacation" state, but read the messages at their convenience
on the members-only Web-based archives.
Remember the bias of the list
Because of the topic that defines the SS-L list, there's an inherent and
natural bias toward talking about problems, rather than about the aspects of health that are going well.
This can be discouraging especially to the
newly diagnosed, who can come to fear that they will have every
problem that everybody on the list reports. Over time, though,
it becomes possible to put the stories into perspective,
and the messages on SS-L can become less overwhelming.