How to find and join lupus support groups
Living with lupus can be difficult. It’s an “invisible illness” — meaning those around you can’t see your fatigue or your muscle and joint pain or any of the many other symptoms. This can be a lonely experience, and that’s why it’s so important for people with lupus to connect with others who have the condition as well.
Lupus support groups foster a positive social experience by creating a safe space for people living with the illness to share their feelings, hopes, or worries. They also allow for lupus education among patients — talking about experiences with symptoms, treatments, and trials can help others on their path to managing the disease. If you’re interested in taking part in one of the many lupus support groups out there, here are a few places to get started.
Lupus support groups
Advocacy groups: Many advocacy organizations have boots on the ground throughout the country and online as well. For example, the Lupus Foundation of America (LFA) is dedicated to providing support through local chapters. These groups can connect you with local experts, events, and other resources to help make life with lupus just a little bit easier. This is a great way to connect with other patients in your area, too. If there’s no chapter near you, there are online options available through LFA as well — LupusConnect is an online forum through which patients can “share experiences, find emotional support and discuss practical insights for coping with the daily challenges of the disease.”
Facebook: Facebook groups are a wonderful way for those affected by lupus to share their experiences. A quick search on Facebook can connect you with a group that may be of interest to you. Here are a few examples:
- Lupus Awareness boasts 20,000 members and notes that “support groups are all about the emotional and physical support that comes from a community going through the same things you are.”
- Lupus & autoimmune disease awareness and sharing is a public group that encourages those with lupus and other autoimmune diseases to share experiences and knowledge. Its 22,000+ members are there for asking questions, ranting, or just saying hello.
- Lupus Warriors SLE Support Group has nearly 27,000 members and provides a space for those with lupus to share their experiences and support fellow patients. It provides a Whatsapp support group as well.
- Lupus Support Group has 7,500+ members and serves to educate and inform as well as provide support for those with lupus and their loved ones.
Reddit: r/lupus is where Reddit users can go to connect, look for advice, and exchange stories. The group includes nearly 10,000 members, and discussion topics run the gamut from symptoms and diagnosis to treatment options to lupus-related memes. The community is supportive and welcoming, and members seem eager to share their experiences — either to get advice or to help others going through something similar.
Interested in participating in lupus research? Volunteers are needed for studies to accelerate treatments and interventions.