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.