published February 28, 2014
Bloomington support group leader reflects: living well with lupus
by Judy Johnson
Just over 25 years ago, my mother died from complications involving lupus. She was a wonderful mother and a dear friend. Prior to her death and continuing to this day, I made ﬁnancial contributions to the Lupus Foundation of Minnesota (LFM) in her honor.
But after her death, I felt a need to do more to honor her memory and all the volunteering she did in the community. I called LFM to see if they could use me as a volunteer, and I shared that I had experience in support group facilitation. They were overjoyed to have someone calling them to be a support group leader! Thus was born the Bloomington Lupus Support Group.
After meeting monthly for over 25 years, my co-facilitator Arlene Knutson and I are stepping away from our support group duties, looking to other volunteer opportunities. I have thoroughly enjoyed meeting and supporting the many people who have come to our lupus support group. I am somewhat unique among the support group facilitators in that I do not have lupus myself. Regardless, I know I have grown as a person as a result of being part of our support group and hope that our work has positively impacted our many members over the years.
Arlene is the third person with whom I have co-facilitated the group. She has been excellent teammate and contributor, and now a good friend. Throughout our many meetings, we have shared and supported many women and men who have lupus and sometimes people with other autoimmune diseases such as ﬁbromyalgia and Sjogrenʼs Syndrome. Ages of group participants have often spanned more than 50 years.
Some members have come regularly, some intermittently, and only a handful have come just once to have their questions answered. Usually someoneʼs ﬁrst visit to a lupus support group occurs right after being diagnosed with lupus or after a serious lupus ﬂare. The person with lupus is usually seeking support, encouragement, answers to questions, compassion and validation.
Our group has always felt it was important for a new member to see others with lupus who are managing the disease. Living with lupus and living well is a common mantra within the group. We always thought of the group setting as a comfortable place to talk, laugh and sometimes shed a few tears. We have also encouraged members to bring a family member or friend to the group to learn more about lupus.
Our support group also met for a Saturday winter breakfast once a year as well as an evening dinner during the summer. We have had guest speakers, one of which was my personal favorite, a pharmacist who was a wealth of information on drugs commonly prescribed to lupus patients and how pharmacists can work with you. Our group also always participated in the Lupus Walk for Hope and 5K Run each September.
It has been an honor and a privilege to share in our Bloomington Lupus Support Group. I will forever remember the experience and would encourage anyone else with a lupus connection, and a drive to do more, to reach out to LFM to learn more about this opportunity. LFM does offer support group facilitator training, so you wouldn’t be tackling it alone. We’ve played an important role for many with lupus and the need is still there.