One of our most important programs that we run is our support group network. We have this high opinion of support groups for two main reasons:
- To foster open discussion of how lupus affects our lives
- To assist and support group members in developing skills to deal with their (or a friend or family member's) life with lupus
A support group is not designed to provide professional psychotherapy or counseling. Almost all Greater Ohio Chapter support group facilitators are volunteers, who have a desire to help others. These volunteers are not always trained professionals, but all support group facilitators receive special training by professionals to provide a caring non-threatening environment. Confidentiality is a must! Any information that might individually identify a group member cannot be discussed/revealed outside the group.
- TTYL (TeleTalk for Young Lupians)
- Designed specifically for adolescent patients living with lupus or living with a family member who has lupus.
Local Support Groups
A lupus support group is an informal gathering of individuals with lupus, their families and friends. It is a place where persons with lupus can share their experiences and ask questions. Most discussions focus on the "how-to's" of living with a chronic illness.
A Support Group:
- Fosters the sharing of feelings, hopes and concerns among people with lupus, family members and friends.
- Promotes education about lupus
- Provides a positive social experience for people who share a common illness.
It is a safe place for people to learn, share and help. Individual differences and confidentiality are respected.
Although there is not a specific program, a member of the Lupus Foundation is always present to facilitate the meeting and provide information about lupus and the services offered by the chapter.
Typically, everyone sits in a circle and begins by introducing him/her self. The discussion follows the inclinations of those present. Often someone has specific questions regarding the disease and/or medications. Other times attendees may bring up problems they have with their family, employment or the medical advice they have been provided. However, persons with lupus are encouraged to learn as much as they can about lupus and to work with their doctors to find the most effective treatment.
Sometime people come because they need to tell their story to sympathetic ears, while others are there just to listen. Some attend the support group regularly, while others' needs are met in one or two meetings.
Learning to adapt to a chronic disease is difficult at best.
A support group can offer tips ranging from dealing with disability benefits to handling the side effects of prednisone. But, the most important role of a support group is to let people with lupus know they are not alone. While one cannot control the disease, support group members can help each other gain control over the feelings of isolation, anger and fear. Persons with lupus are not helpless and they can support each other in dealing with the day-to-day challenges of the disease.
In fact, lupus spouses, other family members and friends are encouraged to come to show their support of persons with lupus. Often it is the person with lupus who is not ready to accept the disease and family or friends come alone to receive information and help. People who are suspected of having lupus, but have not been officially diagnosed, are also welcome to attend the lupus support group. These persons need support in coping with the uncertainty.
Just pick a group!
We encourage you to call the office before showing up to your first meeting, particularly in times of severe weather. Cancellations are rare, but many of our facilitators are lupus patients themselves, and flares happen. Plus, let's face it, we live in Ohio; you never know what the weather is going to do.
All meetings are free and open to the public. They are funded by the generous donations of our members and supporters and the funds raised at the annual Walk To End Lupus Now events.
*It should be noted that the opinions and statements expressed by the group members do not necessarily reflect the opinions or positions of the Greater Ohio Chapter.
Support Group Updates and Cancellations
Check here each month to see if there are any changes to your support group. This is especially important around the holidays, as we try not to hold anything on national holidays. If you have any other questions or are curious about a change not listed on this page, please call our office at 1 (888) NO-LUPUS.