People with lupus, as well as their friends and family members, can benefit from support groups. These support groups may be in person or online.
Lupus is a chronic condition affecting approximately
Because it is a lifelong condition that can affect a person’s quality of life, many people find it helpful to join support groups. This allows them to share experiences and speak with others who are going through the same thing.
In this article, we discuss how support groups can help people with lupus and how to find in-person and online support groups.
According to the Lupus Foundation of America, living with lupus can be challenging. This is because some symptoms, such as fatigue, depression, and joint pain, may not be visible to others. Despite being invisible symptoms, they can significantly impact a person’s quality of life.
Additionally, lupus can impact a person’s mental health. The Lupus Research Alliance estimates that 25 in 100 people with lupus experience depression, and 37 in 100 have anxiety.
Sharing and spending time with other people going through the same or similar experiences may help a person to manage their condition. A 2018 study of African American women with lupus states that social support is key for people with a high disease burden.
The following are nationwide support groups that offer in-person meetings.
LupusConnect
The Lupus Foundation of America set up the LupusConnect community, a predominantly online platform where people with lupus and their loved ones can seek support. They can discuss experiences and coping strategies with one another.
It is suitable for all people with lupus and provides online forums specifically for adolescents, males, caregivers, and pregnant people.
LupusConnect is free of charge.
In addition to online support groups, LupusConnect also offers in-person groups. People can search for their local LupusConnect support group via the Lupus Foundation of America website.
Learn more about LupusConnect here.
Local chapters
The Lupus Foundation of America has multiple chapters across the U.S.
These chapters are free of charge and offer support in various ways to people with lupus and their loved ones, including support groups, education programs, and resources.
Learn more about The Lupus Foundation of America’s local chapters here.
Kaleidoscope Fighting Lupus
Kaleidoscope Fighting Lupus is a company that aims to educate, inform, advocate, support, and collaborate.
It currently holds monthly in-person groups in Portland, Oregon, and Springfield, Massachusetts. Membership is free.
The organization advises people to get in contact with it if it does not list any groups near them because it works with a variety of other organizations.
Learn more about Kaleidoscope Fighting Lupus here.
Lupus Foundation of New England
The Lupus Foundation of New England offers free support groups in the following locations:
- Massachusetts
- Rhode Island
- New Hampshire (telephone only)
Learn more about The Lupus Foundation of New England here.
The Hospital for Special Surgery
The Hospital for Special Surgery offers a variety of free support programs in New York. These support groups include:
- LANtern (Lupus Asian Network): This group supports Asian Americans with lupus and their families.
- SLE Workshop: This is a monthly session for people with lupus and their families.
- LupusLine: This offers one-to-one support for people with the condition as well as caregivers.
- Charla da Lupus: This group offers support for Spanish-speaking people.
- Teen and Parent Chat Groups: These are monthly in-person groups for teenagers and parents that lupus has affected.
Learn more about The Hospital for Special Surgery’s support groups here.
Online support groups are another way a person can access support and share experiences with other people.
MyLupusTeam
MyLupusTeam is an online community that allows people to connect via forums.
A person can create a profile and then access a community of people with the same experiences. Membership is free.
Learn more about MyLupusTeam here.
The Mighty
The Mighty is a free online service hosted on a social-media-style platform. It features different forums about various chronic conditions, including lupus.
There are several different support groups a person can join relating to lupus. Additionally, there are also some general groups relating to all health conditions, including chronic pain management.
Learn more about The Mighty here.
Lupus Warriors
This is a Facebook group that a person with lupus can join free of charge. There are more than 13,000 members, making it one of the largest online support networks for people with lupus. It is suitable for both those with lupus and their loved ones.
The description of the group states that the intention is to provide people with a place to receive emotional support, share information, ask questions, vent, and share with others who understand.
A person must request to join the group and fill in a small questionnaire. Nonmembers cannot view the posts in this group.
Spouses and loved ones can join some of the above platforms, including Lupus Warriors and LupusConnect. The Hospital for Special Surgery also welcomes loved ones into the support groups it hosts.
Additionally, a person can look into their local chapter. These are communities set up by the Lupus Foundation of America. They provide support groups, education programs, and resources for people with lupus and their loved ones.
Many people with chronic conditions such as lupus experience mental health challenges. A person should contact a mental health professional if they experience symptoms of depression.
Some
- feeling persistently sad, anxious, empty, hopeless, or having negative thoughts
- irritability, frustration, and restlessness
- feeling guilty, worthless, or helpless
- loss of interest in activities or hobbies
- reduced energy or feeling fatigued
- concentration, memory, and decision-making difficulties
- sleeping difficulties
- appetite or weight changes
- thoughts of death or suicide
Lupus is a chronic condition that can affect a person’s quality of life and mental health. There are a variety of support groups available for a person to attend, both in person and online.
In addition, there are also some support groups that support loved ones and caregivers.
If a person feels they may have depression as a result of their lupus symptoms, they should contact a mental health professional for advice and support.