Many lupus patients feel lonely and isolated because the people in their lives don’t understand—or even believe—what they’re going through. A good support group can help you feel seen and heard, provide companionship, and put you in touch with people who have found successful ways to cope with the illness and the changes it inflicts upon your life.
Finding the right support group isn’t always easy, though. Fortunately, you have a lot of options. You may like the idea of a local support group, but have trouble finding one or your symptoms may make online support a better option. We’ve identified some so you can find a group that’s right for you.
Membership fee: FreeStructure: Online forumDetails: Offers in-depth educational resourcesThings to consider: Posts in public forums can be found via search engines and there is no professional support
Inside the Lupus Research Alliance’s forum you’ll find a clean, uncluttered design. You can browse through current threads or sort by category. You do need to become a member, but it’s free.
Also in the community section is a blog featuring information on a wide array of lupus-related topics, including research and advocacy events. In other areas of the site, you can get more in-depth information on research and up-and-coming treatments, as well as a glossary, medical and financial resources, and educational materials on lupus.
A unique feature of the support group are videos made by members, friends and family, scientists, doctors, and advocates, which help to improve the lives of people with lupus.
It’s important to note that the forum has a private section, but anything posted outside of that section is public and available to search engines. In this (and any) public forum, you may want to consider a username that can’t be connected to you.
Membership fee: FreeStructure: Online forumDetails: Features support groups for more than 600 health problems, easy to post and join conversations, and only members can see your postsThings to consider: It is not ideal for those who need structured support groups or specifically for people with chronic pain
The Mighty is a social media site with support forums focusing on more than 600 health conditions. In addition to lupus, you can find groups for chronic pain and numerous pain-related conditions. This is helpful if you’re living with multiple diagnoses because you can find support for everything in one place.
The forums have an informal structure that allows you to browse through conversations and join in where you want. A free membership is required and only members can see your posts.
Membership fee: FreeStructure: In-person meetings, online forumsDetails: There are different communities, a treatment browser, and you can connect with a health professional educatorThings to consider: In-person meetings are only available in certain states
The LupusConnect free online community is part of the Lupus Foundation of America and features a range of forums geared toward different types of people, so you can find one that is a fit for you. There are adolescent-focused groups, including ones for young adults, teens, and parents of children and teens with lupus. There are also communities for men with lupus, pregnant women with lupus, and caregivers. Another offering is for native Spanish speakers.
The site also offers a resource center where you can learn about research initiatives, become an advocate, join a Walk to End Lupus Now event, or create your own fundraising event to help with research. There’s also a page where you can contact a health educator to get personal help by filling out a form.
Additionally, The Lupus Foundation of America has face-to-face support groups across the country. Currently, there are groups in about half of the states, especially in areas with higher populations, and you can search by state to find the group closest to you.
Membership fee: FreeStructure: Online forumDetails: The website features a clean layout, and you can search for clinical trialsThings to consider: There is a lot of scrolling to view conversation topics and there is no professional help
Smart Patients’ lupus forum offers a clean and simple layout that’s easy to browse through, and all you need to do is sign up for a free membership. The site features forums for all kinds of health conditions, including one for autoimmunity in general. It’s an informal forum that you can visit whenever you like.
One part of the site is dedicated to sharing stories from members of the communities, as well as researchers. The site also offers a clinical trial search for people interested in following research or finding trials to participate in, so they can try experimental treatments.
Membership fee: FreeStructure: Online forum and communitiesDetails: It is easy to use, there are intimate, unstructured forums for numerous health conditionsThings to consider: There is no in-person support and no hands-on professional support
MyLupusTeam is part of a site called MyHealthTeams, which features online support forums for about three-dozen health conditions, including chronic pain, rheumatoid arthritis, fibromyalgia, migraine, depression, and endometriosis. The communities are all available online and via mobile apps. The site requires a free membership.
Once you join the team, you can create a profile, share your story, and begin posting. It’s an unstructured forum where you can drop in and chat whenever you want.
Membership fee: FreeStructure: In-person meetings, online resourcesDetails: Offers in-person meetings, allows you to start a local group, and helps fund research for a cureThings to consider: In-person meetings are only in two locations, no online forums for 24/7 support, and no professional support
Formerly known as Molly’s Fund Fighting Lupus, Kaleidoscope Fighting Lupus aims to advocate for patient support and works with the government and foundations “to help fund research for a cure.” The website features a well-respected blog that covers all aspects of lupus and the ways it affects your life, plus information on the latest medical research.
Kaleidoscope Fighting Lupus currently hosts in-person support groups in two locations: Portland, Oregon, and Springfield, Massachusetts. If you’re not in either of those areas, you can contact the organization and it will help you find support groups run by organizations it partners with. The groups let you share your stories and listen to others, while at the same time getting the emotional and physical support you need.
The organization also participates in advocacy and awareness events, which you can learn more about on its website. If you’d like to volunteer your time to help with programs benefitting lupus research and advocacy, you can sign there.
Membership fee: FreeStructure: Facebook groupDetails: There is a large group of members and it is easy to connect with others privatelyThings to consider: There are no formal forums and no professional support
Lupus Warriors is a large and active Facebook group with numerous administrators and moderators who work to keep things focused and positive. To join, you have to request membership and fill out a brief questionnaire. Membership is free.
Lupus Warriors is a closed group, which means your posts can’t be seen by anyone who’s not a member. Advertisements and fundraising are not allowed, and the group has clearly posted policies that are intended to keep the group supportive.
Additional reporting by Ally Hirschlag.
