The 7 Best Lupus Support Groups of 2020

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First Look

Best Overall: Lupus Research Alliance at lupusresearch.org

"The community section is a blog featuring information on a wide array of lupus-related topics including research and advocacy events."

Best for Those With Multiple Illnesses: The Mighty at themighty.com

"In addition to lupus, you can find groups for chronic pain and numerous pain-related conditions."

Best for Specific Groups: LupusConnect at inspire.com

"The site also offers a resource center where you can learn about research initiatives, become an advocate, or join a Walk to End Lupus Now event."

Best for Finding Clinical Trials: Smart Patients at smartpatients.com

"One part of the site is dedicated to sharing stories from members of the communities as well as researchers."

Best for Connection: MyLupusTeam at mylupusteam.com

"It’s an unstructured forum where you can drop in and chat whenever you want."

Best In-Person: Kaleidoscope Fighting Lupus at kaleidoscopefightinglupus.org

"Kaleidoscope currently hosts in-person support groups in two locations: Portland, Oregon and Springfield, Massachusetts."

Best for Facebook: Lupus Warriors at facebook.com

"Lupus Warriors is a closed group, which means your posts there can’t be seen by anyone who’s not a member."

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. Just having your pain, fear, symptoms, and grief for your old life validated can make a big difference in how you feel.

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 the best ones, so you can find a group that’s right for you. Most of them are online, but several have in-person group options as well.

Our Top Picks

Best Overall: Lupus Research Alliance

Lupus Research Alliance

Lupus Research Alliance

The Lupus Research Alliance, a registered 501(c)(3) nonprofit organization, claims to be the world’s leading private funder of lupus research. Its community forum is just one aspect of what it offers. Inside the 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. They are meant to be "a rich testament to the commitment, challenges, insights, and accomplishments that give us hope, strengthen our community, and motivate us to continue our important work."

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.

Best for Those With Multiple Illnesses: The Mighty

The Mighty

The Mighty

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. And, not to worry: The site works to maintain a positive and supportive environment. A free membership is required. Only members can see your posts, so you don’t have to worry about your health information being “out there” on the internet for anyone to see.

Founded in 2014, The Mighty's main goal has been to help people. It is supported by advertising revenues, but the ads are subtle and not disruptive as you post or browse around the site.

Best for Specific Groups: LupusConnect

LupusConnect

Inspire

The LupusConnect free online community is part of the Lupus Foundation of America, a 501(c)(3) charitable organization. Its main goal is to "improve the quality of life for all people affected by lupus through programs of research, education, support, and advocacy."

The LupusConnect 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.

Best for Finding Clinical Trials: Smart Patients

Smart Patients

Smart Patients

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. Like a few others on this list, the site has 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.

Smart Patients is a company founded on the principle that the people with the illness—the patients—are an underutilized resource. On the site, the founders say: “We've watched patients become experts in their conditions—and we see that their knowledge improves the care they receive. With the right tools, you and other patients can do the same.”

Best for Connection: MyLupusTeam

MyLupusTeam

MyLupusTeam

MyLupusTeam is similar to The Mighty and Smart Patients, but it features a streamlined design and a more intimate feeling.

It’s 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.

MyHealthTeams is a venture-capital-backed independent company that aims to provide “safe, objective, patient-driven social networks.” The main page also has a link to crisis networks, such as suicide and abuse hotlines and websites.

Best In-Person: Kaleidoscope Fighting Lupus

Kaleidoscope

Kaleidoscope

Formerly known as Molly’s Fund Fighting Lupus, Kaleidoscope Fighting Lupus is a 501(c)(3) nonprofit organization with a mission to "educate the public and to inform the medical community about lupus."

It 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 offered by Kaleidoscope Fighting Lupus are meant to 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.

Best for Facebook: Lupus Warriors

Lupus Warriors

Lupus Warriors 

If you already spend time on Facebook, a group there could be a good option for you.

Many lupus support groups exist on this platform, but Lupus Warriors stands out. Its purpose is to help you "share awareness, information, and personal experiences of battling lupus."

It’s a large and active 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 and “drama-free,” as well as to protect members’ privacy.

If you want to check out this group, be sure to click on the link above rather than searching on Facebook, as multiple groups use the name Lupus Warriors.

How We Chose the Best Lupus Support Groups

The groups listed here are all free, accept anyone with lupus, and are backed by well-respected charitable organizations or companies that are specifically dedicated to providing services (not products) to people who are living with lupus and chronic illness(es).

To make this list, the online forums and websites must be well-designed, easy to use, and moderated, so that the experience is positive. Beyond that, most of them feature additional resources, including Lupus Research Alliance’s educational articles and Lupus Connect’s offer to put you in touch with a healthcare provider. In-person groups, such as Kaleidescope Fighting Lupus, made the cut because it was backed by a reliable organization and has clear information on its website.

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 Group 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. They may have different sections for different topics or just one main space for all of the threads.

In-person groups are more structured, with regular meeting times, organizers, and meeting topics. Organizers may bring in guest speakers and set a different educational topic for each meeting. You’ll also find different levels of structure from one in-person group to another.

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.

What Do They 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.

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Article Sources
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  1. Brennan KA, Creaven AM. Living with invisible illness: social support experiences of individuals with systemic lupus erythematosus. Qual Life Res. 2016;25(5):1227-35. doi:10.1007/s11136-015-1151-z