Lupus is a complicated autoimmune disease that can affect many parts of the body including the joints, kidneys, lungs, brain, and blood vessels. There is currently no conclusive cause, but genetics are thought to play a part. Symptoms can include rash, fatigue, joint pain, and fever.

What are lupus support groups?

Lupus support groups are places where people affected by this disease can meet, in-person or online, to provide each other with emotional support, camaraderie, practical advice for living with lupus, and information about treatment and management strategies.

Is a lupus support groups right for me?

Many motivations exist for seeking a support group. If you feel isolated or alone, need emotional support, or want to find management or treatment strategies that have worked for others, one of the above communities could be helpful to you. You might need to try out several groups before you settle on the one that’s right for you.

How are lupus support groups structured?

Structure varies depending on the group you choose. Online communities are typically unstructured. You can drop in whenever and participate as much and as often as you want. In-person groups are more structured, with regular meeting times, organizers, and meeting topics. You may find that you prefer one style over another or that a combination of an in-person group and an online forum is best. It all depends on your own needs.

How much do lupus support groups cost?

All of the groups listed here are free, but the ones that are run by nonprofit organizations may ask for donations to help cover costs. Most in-person groups are free but, again, they may request donations. Other groups may charge a small fee for attendance.

7 Lupus Support Groups of 2021

Living with lupus is difficult, and lupus support groups can be a big help in facing the challenges.

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.

Lupus Research Alliance

Key Specs:

Membership fee: Free
Structure: Online forum
Details: Offers in-depth educational resources
Things 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.

The Mighty

Key Specs

Membership fee: Free
Structure: Online forum
Details: Features support groups for more than 700 health problems, easy to post and join conversations, and only members can see your posts
Things 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 700 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.

LupusConnect

Key Specs

Membership fee: Free
Structure: In-person meetings, online forums
Details: There are different communities, a treatment browser, and you can connect with a health professional educator
Things 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 well over half of the states, especially in areas with higher populations, and you can search by state to find the group closest to you.

Smart Patients

Key Specs

Membership fee: Free
Structure: Online forum
Details: The website features a clean layout, and you can search for clinical trials
Things 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.

MyLupusTeam

Key Specs

Membership fee: Free
Structure: Online forum and communities
Details: It is easy to use, there are intimate, unstructured forums for numerous health conditions
Things 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 50 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.

Kaleidoscope Fighting Lupus

Key Specs

Membership fee: Free
Structure: In-person meetings, online resources
Details: Offers in-person meetings, allows you to start a local group, and helps fund research for a cure
Things 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 on there.

Lupus Warriors

Key Specs

Membership fee: Free
Structure: Facebook group
Details: There is a large group of members and it is easy to connect with others privately
Things 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.

A Word From Verywell

Lupus can be a debilitating disease that impacts around 1.5 million people a year in the United States. And like any disease that can make daily life more difficult, it’s helpful for people living with it to have a support group made up of others experiencing similar issues.

Frequently Asked Questions

What is lupus?

Lupus is a complicated autoimmune disease that can affect many parts of the body including the joints, kidneys, lungs, brain, and blood vessels. There is currently no conclusive cause, but genetics are thought to play a part. Symptoms can include rash, fatigue, joint pain, and fever.
What are lupus support groups?

Lupus support groups are places where people affected by this disease can meet, in-person or online, to provide each other with emotional support, camaraderie, practical advice for living with lupus, and information about treatment and management strategies.
Is a lupus support groups right for me?

Many motivations exist for seeking a support group. If you feel isolated or alone, need emotional support, or want to find management or treatment strategies that have worked for others, one of the above communities could be helpful to you. You might need to try out several groups before you settle on the one that’s right for you.
How are lupus support groups structured?

Structure varies depending on the group you choose. Online communities are typically unstructured. You can drop in whenever and participate as much and as often as you want. In-person groups are more structured, with regular meeting times, organizers, and meeting topics. You may find that you prefer one style over another or that a combination of an in-person group and an online forum is best. It all depends on your own needs.
How much do lupus support groups cost?

All of the groups listed here are free, but the ones that are run by nonprofit organizations may ask for donations to help cover costs. Most in-person groups are free but, again, they may request donations. Other groups may charge a small fee for attendance.

Additional reporting by Ally Hirschlag.

3 Sources

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