This year, the annual Lupus Education Symposium held in Portland by the Pacific Northwest Chapter of the Lupus Foundation of America will not be held. The symposium in Spokane had to be cancelled also, but there will be one held in Seattle on May 17th. The cancellations were due to lack of participation, scheduling and no public requests for topics.
There is no longer a sponsored lupus support group offered in the Portland area, but there are several support groups through the Pacific NW chapter held in places throughout Washington, Idaho and, soon, in Montana. There may be other support groups individually organized, such as the one in Seaside, but for the most part, little is known to be available here locally to Oregonians with lupus.
The Annual Mad Hatter Walk & Roll event is still scheduled to be held on Saturday, September 27th, 2008 at Willamette Park in Portland. There is the First Annual Lupus Golf Tournament to be held here on Sunday, June 15th at the Stone Creek Golf Club. In Washington, there will be walks in Olympia, Seattle and Spokane -all supported through the Pacific NW LFA chapter. There will also be a walk held in Seattle on May 18th sponsored by the Alliance for Lupus Research .
As we watch the awareness, participation or memberships and networking continue to strengthen in the other Pacific NW states, we can’t help but wonder: What is going on, Oregon? We know that there are people in our communities who have lupus or lupus-related conditions, but who are you? Where are you? How are you doing and what, if anything, do you need to support yourself in managing your illness?
We have a tendency, as people with lupus, to become very private about our illnesses for several reasons – employment or health insurance concerns, worries about burdening friends & family or using denial as a means of coping with the unknown. When we draw ourselves inward and put up our privacy screens, we end up encouraging friends & family, the social and political programs, statisticians and researchers and, inevitably, the insurance, pharmaceutical and health care industries to accept the ‘invisibility’ of lupus.
Do we fully comprehend how seeing ourselves as private islands in our lupus management actually harms us in gaining access to information, resources and ‘understanding’ from the general public? If we don’t acknowledge our situations through word (written or spoken) and participation in events or organizations-why should anyone bother to listen?
