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How Do I Choose the Best Lupus Support Group?

By Valerie Goldberg
Updated: May 17, 2024

Lupus is a chronic autoimmune disorder that can cause inflammation in the joints, kidneys, lungs and various other areas of the body. As of 2011, there is no cure for lupus, so it can be a rough diagnosis to receive. Joining a lupus support group can help patients come to terms with the illness, make friends and find ways to live a higher quality of life while dealing with the condition. When choosing a lupus support group, patients have to determine which type of group best fits their personal needs. Available groups include those that accept members by age or by gender, as well as those that meet in person or online.

Teens living with lupus may need a special type of support. Lupus symptoms such as rashes, fever and fatigue may make teens feel isolated from their peers. Joining a lupus support group designed strictly for teens gives young people the opportunity to connect with others their age who know exactly what they go through each day. Young people also may feel more comfortable talking about their condition in front of a group of peers instead of a room full of adults. Teenagers should talk to their doctors or counselors if they need help finding a local teen lupus support group in their area.

The bulk of lupus patients are female. All-female lupus support groups may be a good fit for women who want to discuss how lupus has affected their lives in terms of raising children, having sex and socializing. It can be difficult for some patients to talk about these topics in front of members of the opposite sex. Likewise, the relative rarity of the condition in men also may leave male patients seeking gender-specific support.

Lupus has varying levels of severity. People who are very ill or particularly shy may find that an online lupus support group is best. Online support groups are available in the form of chat rooms, message boards and video chat. Lupus support groups on the Internet allow people with lupus to talk about symptoms openly and anonymously, which can be great if a person wants to find an answer to a question that he or she is embarrassed to ask. Another perk of online support platforms such as message forums is that they are accessible 24 hours a day; if a person is up late at night and needs to vent about the illness, odds are there will be others somewhere in the world who are awake and ready to communicate.

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