Sanity in Numbers? – Support Groups for Lupies

The Things I Do When I'm Bored

Too much ‘alone time’? Joining a group can help motivate positive changes. (Photo credit: WarzauWynn)

When I was first diagnosed with lupus, my mother pressured me to join a support group. To her, it made perfect sense; since she couldn’t understand what was happening to me, I should seek out others who were going through the same thing. From them, I could avoid feeling alone, learn about lupus and better cope with this huge change in my life. I’m not a very social person by nature, but I agreed that a support group might help me find smart ways to make my lupus as livable as possible, so I tried a few different ones.

The experiences varied, but in the end I found that, for myself, support groups did not help me cope better with my lupus – in fact, I often left meetings or message boards feeling even more helpless, depressed and bitter about the world in general. I’ve been support-group- free for over 5 years now and I have to say that I don’t miss them. Obviously, this is only my experience, not a rule, but even Psychology Today finds a thin line between what can make a support group helpful or harmful (yes, I’m aware that the article is aimed at groups for mothers, but I think the idea can apply to any support group).

Is a Support Group Right For You?

Students from the Support Unit

Support groups exist for all ages. (Photo credit: Wikipedia)

A good support group can be extremely helpful – it gives a person a safe environment to express feelings that they might not have any other place to, connects them with others in the same situations, provides a place to exchange helpful information and resources and, most importantly, can prove that you are not alone. It can even be enjoyable, given the right mix of people and the particular structure of the group. But it’s important to keep a balanced perspective of what support groups are, what they can do and, ultimately, if they will be helpful to you as an individual.

If you’re considering joining a support group, here are a few questions to ask yourself:

  • Why do I want (or think I should) join a group? Do I want to meet others like me? Am I getting no support from friends and family?
  • What should I get from a group? Do I want ideas to try? Do I just want someone to vent to? Do I need help and resources? Do I want to go to events or do group projects?
  • Do I like being around groups of people? (Obviously, if you’re an introvert then a group setting might not work best for you.)
  • What would my ideal group look and act like? How would the atmosphere and environment feel?
  • Would I prefer a peer-led group or a group led by a lupus authority – a more casual structure or something with a plan and a goal?

These questions can help give you an idea of what kind of groups might be most helpful for where you are in your personal health journey.

What are the options? (Online, In-Person, Peer-led, Structured, Self-Help)

There are tons of different types of groups and programs that offer support and information. Some are informal and relaxed – a group that gathers once a week at a cafe or diner to just catch up, for example. Peer-led support groups can also fall into this category. Some are full-fledged programs that are structured, such as the one I teach; the Stamford Model Chronic Disease Self-Management Program. This program is a 6-week interactive class that teaches those with any chronic illness pro-active ways to better care for themselves. Many of the participants I’ve taught have continued to keep in touch with each other after the end of the class, organizing their own meetings to motivate each other to continue what they’ve learned. A good place to check for more structured  types of programs and groups are national medical associations such as the Lupus Foundation of America or the National Arthritis Foundation – their local chapters might have meetings right in your area. Can’t find a meeting? You can always get the ball rolling and start your own using, reaching out to your area through local newspapers, word of mouth, church groups or online platforms such as or Google +.

For those who aren’t too keen on a group setting or really have nothing in their area, there’s always the internet. There are tons of message boards, online communities, blogs, videos, and groups. Whatever social media platform is your current favorite, there’s sure to be people on there already talking about whatever ails you, so don’t forget your good old-fashioned keyword searches for topics such as #lupus, or lupus groups to find others like you.

Another great place to start is over on my Lupus Resources page. And you can always connect with me personally via Twitter or Google +.

Red Flags

How can you tell if a support group is toxic? Here are a few suggestions from my experience:

  • Drama
  • If you feel worse or more depressed after time spent with the group
  • If the group encourages or increases isolation from family and/or friends
  • Quick, judgmental behavior instead of balanced consideration
  • Open approval of anything instead of balanced consideration
  • “Us vs Them” mentality
  • One person or mini-group dominates sessions
  • “Doom and gloom” mentality – There’s a difference between venting and wallowing. Wallowing does not help.
  • If the group discourages you from making healthy changes (either openly or in more “well I don’t think that helps” kind of ways)

Are there any other red flags that you can add to the list? What have been your experiences with support groups? Have you subscribed to my blog to get new posts and other goodies by email?

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