Lupus Support Groups: More Than Just a Meeting?

Should You Try a Lupus Support Group?

Lupus Support Groups

I have often wondered if the time and energy required to attend a support group was worth the exertion. One meeting takes nearly three hours of my time, and the process of going is strenuous enough that it’s usually the only thing I can accomplish that day.

However, it only took one lupus support group meeting for me to realize that the right group is certainly worth it! My group has quickly become one of the most valued things in my life.

Here are a few reasons why I’ve found joining a lupus support group worthwhile and why I encourage you to make going to a support group one of your top priorities.

What Is a Support Group?

Support groups are usually organized by professionals with experience of the condition to which the group is focused on; someone such as a lupus nurse. However, a growing amount of support groups are being set-up by the very same people who are living with a chronic condition — people like you and me!

Some support groups can take place on a regular basis; either weekly, monthly or several times throughout the year. Depending on the size of the group, meetings can happen in a set place, such as a community center or a church hall. If the group is small, some people meet at a member’s home.

What Do They Offer You?

Support groups offer:

  • A safe space. Within the privacy and comfort of a support group, you are able to build relationships with other members who can understand what you are experiencing.
  • Shared experience. The majority of those in attendance at a support group will be just like you. You can share your day-to-day challenges — for example, your daily medication list!
  • An opportunity to be yourself. Support group members are able to empathize with you, something family and friends cannot always do. The space to be yourself can be both a tremendous relief and also extremely emotional.
  • A place to obtain and share information. A support group is a great place to give and receive relevant information on your condition and/or associated conditions and medications.
  • A place to find out if you are eligible for external financial aid/support. Who better to ask what is available than people going through the same thing as you?

Support Groups Bring Solidarity

Dealing with a disease like lupus isn’t something you should try to do on your own. Life with lupus can be difficult –even scary–and you’ll benefit immensely from meeting people who have first-hand experience with what you are going through.


When I attended my first support group meeting, I was stunned and relieved to realize that other people were facing the same challenges. Even though I had read other people’s stories online, it was hard for me to believe that someone could be as sick as I was until I spoke with them in person.

After connecting with other lupies, I no longer felt as isolated when my lupus symptoms appeared. I knew I belonged somewhere and I could reach out to fellow group members when I needed compassion or advice. Having that camaraderie with others made my battle with lupus a little bit easier to fight.

Next page: what to expect from a support group, and looking at online support.

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