Support groups aren’t only helpful, they’re a necessity for many who suffer from lupus. Whether online or in-person, these groups provide the help and support many with lupus need. Lupus support groups provide help when you need it, from people who know intimately what you’re suffering from, but you can also go to them to:
- Ask about any unusual symptoms you’ve been having
- Talk about their experiences with treatments you’re thinking of trying
- Provide words of encouragement during particularly painful or hard days
- Get a laugh, when you need it the most
- Hold you accountable for any new health goals or habits you’re trying to create
- Share tips and tricks you’ve learned while living with lupus
- Organize fundraisers or activism efforts
We’ve gathered 20 of the best online lupus support groups in this post, as well as listed ways to find the best local ones near you.
20 of the best online lupus support groups
Online lupus support groups offer 24/7 access to support, kindness, and aid to anyone who suffers from this condition. Local groups are important, and we’ll give some tips for finding those below, but online options can connect you with people around the world, instantly. This is also a better option for people who can’t leave the house or are unable to find local groups. Plus, with the large groups, you can often find specific help with any treatments you’re thinking about trying or symptoms you’re worried about.
How to engage with online lupus groups
While there are many similarities between online and local groups, there can be some differences that you need to be aware of. People in an online environment may write things that they normally wouldn’t say. Larger groups can get overrun by smaller factions of hateful or dramatic members. While the large majority of lupus support groups are just that–places of kindness and support–it pays to double-check before joining any community.
If possible, watch for a few days before jumping into discussions. First, ensure that the message board isn’t a place where hate and conspiracy theories run rampant. Neither of these will be helpful for your condition. Make sure that a particular community is respectful, opposed to drama, and kind. Read posts to see if they match what you’re looking for in a community. Look for active moderators who are engaged in daily conversations.
While these can all be important measures of an online community’s character, also know that group dynamics can change over time. If a previously therapeutic group is being run by increasingly dramatic or hateful members, it can lead to more stress on your end. There’s nothing wrong with leaving a community if it no longer provides what you need–online or in-person.
Finally, never share your personal information online. This includes your full name, telephone number, physical address, or other highly-sensitive information.
One of the greatest benefits of Facebook communities is that since there are so many people, groups can focus around very specific topics. Some Facebook groups for example, encompass all chronic conditions, while others are a resource for mothers who suffer from lupus. Remember the basic tenets of joining an online group–make sure it’s energizing rather than stressful, kind rather than accusatory–and jump into those that match your energy and needs.
The best Facebook lupus support groups include:
- Pain Doctor’s Facebook chronic pain support group
- Lupus Warriors SLE Support Group
- Lupus Rebel
- Global Lupus Support Group
- Lupus México
- Lupus Warriors
- Viviendo con Lupus
- Lupus Buddies
- Lupus Laughs
- Christian-based, Lupus Lovelies
- Lupus, Pregnancy and Motherhood
- Living with Lupus
- Lupus Canada
- Friends & Family of Lupus
Message boards and forums
Some of the best online message boards and forums for lupus patients include those at:
- LupusConnect by the Lupus Foundation of America
- My Lupus Team
- MD Junction
- Daily Strength
- Life with Lupus
How to find local lupus support groups near me
Finding a local support group can be one of the most powerful, healing experiences you can have. You find a community of people who deal with the challenges of living with lupus, can give you a shoulder to lean on when you need support, or can suggest favorite therapists or doctors in your area. The best local groups are moderated by thoughtful and knowledgeable leaders who place comfort, privacy, and respect above all else.
They may also:
- Schedule local experts, like massage therapists or pain specialists, to come in to talk about certain aspects of the condition
- Organize fundraising or activism efforts within the group
- Provide outreach activities or exercise you can do to talk about to your friends or family
But overall, local groups provide a safe area for in-person support. Finding a local group is fairly straightforward, and easy to do.
Talk to other patients or doctors
Your first stop should be to talk to your healthcare team or other lupus patients to see if they have any recommendations. Often, these personal recommendations can help you find a community with the same energy and goals that you have as well. If you live in a larger community, for example, some groups may be more focused on activism and fundraising, while others provide warm support with monthly pot-lucks and self-care activities.
Talk to any professionals who are helping you on your journey towards pain relief, including:
- Your doctor
- Nurses or physician’s assistants
- Physical therapists
- Massage therapists
- Other patients
- Mental health counselors
- Friends or family
Go online for local
If you’re unable to ask for recommendations, the next best way to find local lupus support groups is online.
Your first stop should the Lupus Foundation of America. This advocacy group provides a listing of their national network of lupus communities throughout the U.S. They list both their local chapters–who act as on-the-ground experts in many states–as well as trusted support groups.
Molly’s Fund is another advocacy and education group for the lupus community. This leading organization hosts a few lupus groups across the country, in areas like Portland and Nashville.
Another place to find local groups is through Meetup.com. This site helps people connect who share common interests and activities. Thousands of lupus warriors use this site to find local communities, events, and groups to help them navigate the challenges of living with this condition. You can also find meetups for related conditions, like chronic pain, chronic fatigue syndrome, and arthritis.
Finally, you can also try searching “lupus support groups” into Google along with the name of your city or state. You’ll likely find a long list of local resources and community groups to explore.
Beyond support groups
While support groups are an invaluable resource for anyone living with a chronic condition, they’re not the only way to find the support you need. Groups that only meet once a month, for example, may not be readily available when you truly need help.
That’s why we recommend using a blended approach–finding a local support group, checking into an online one as you need guidance and support, and reaching out to your loved ones as well. And remember, local can go online. If you’ve found a great local group, encourage them to create a Facebook group where you can find support during moments when meetings are far away.
Your family or close friends shouldn’t be your only source of support, but they are a crucial part of your support network. As Mayo Clinic explains:
“Talk about lupus with your friends and family and explain ways they can help out when you’re having flares. Lupus can be frustrating for your loved ones because they usually can’t see it, and you may not appear sick. They can’t tell if you’re having a good day or a bad day unless you tell them. Be open about what you’re feeling so that your friends and family know what to expect.”
Living with lupus can be a lifelong challenge. You need support. If you haven’t already been diagnosed with lupus, but believe you have it based on your symptoms, your first step is to get one. You can find a pain specialist in your area by clicking the button below. A highly-trained specialist can help diagnose the causes of your symptoms and talk to you about treatment options.