Support Systems
Perhaps one of the most difficult aspects of lupus or any chronic illness is finding understanding from friends, co-workers, and loved ones. To be fair, it is difficult for them to stand in the patient's shoes and symptoms can seem vague and fleeting. They must judge the patient's pain level and quality of life by mere appearances. How frustrating it must be to see your friend or loved one active and cheerful one day and seemingly "normal" only to see them bed-ridden and miserable the next. The disease's unpredictability not only impacts the patient's life dramatically, but confuses their associates and frustrates plans and expectations. The patient and their loved ones should have some sort of support system in place.
Support for Patients
FromSupport Systems from the Lupus Links page there are several links to various on-line resources for support to the patient. However, the number of on-line forums and "real-life" groups is countless and the best approach after perusing the links provided in this document is to contact your nearest lupus organization for information on local groups. Many organizations have regional offices that have their own support groups or on-line forums.
Of course, the best on-line support group available is Alt.Support.Lupus - yes, I am biased. ASL is a usenet newsgroup and differs from other internet forums in that the participant relies on a "newsfeed" and not all ISPs have good newsfeeds. If you do not see multiple posts to ASL on a daily basis than it is likely that your ISPs news service is lacking. There are several free and paid usenet news services available.
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Support for Family and Friends
Finding support for the family and friends of the patient seems a more daunting task. Many patients take their support persons with them to meetings and many participants in on-line forums are family members who want to learn more about the disease and help their loved ones in the battle with the illness. But there is a definite lack of real life support groups specifically for family and friends. If you have information on such a group, please share it with the good folks at alt.support.lupus and with the authors of this document.
The ACOR mailing list is a known source of support for the family and friends of patients.
http://www.acor.org/ ACOR's Mailing Lists, Lists are referenced alphabetically.
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