Is it a support, education, leadership, networking or advocacy group?

June came over to me and announced, “I think you should start a support group.”  I looked at her, thinking, “Me? Are you out of your mind?  I don’t have any qualifications for this.” She continued on, “You’ve been to support groups, right? And you’re a leader.  That’s all you need.”  I mumbled that I’d think about it, hoping she’d simply forget it.  She didn’t.  She was PPAL’s first director, trying to grow the organization, creating new groups throughout the state.  I looked like a pretty good prospect.

A few weeks later, I found myself in a room with 8 or 9 other parents, who all assumed I knew what I was doing.  I was excited at the turnout, feeling like an imposter but determined I’d make the time we spent worthwhile.  It turned out the group was that rare combination of valuable and enjoyable, that night and many, many nights to come.

Although we called ourselves a parent support group, it was much more.  We had only three “rules,” one around privacy (what’s said in the group, stays in the group), one around blaming (no blaming, especially not yourself) and one on ownership (the group belongs entirely to the group).  Because of rule #3, group members became very proactive.  They scolded one another when someone said their child’s behavior or illness was all their fault.  They’d point out that you can’t find solutions when you are blaming yourself, or someone else.  They’d come with resources and new ideas for people they’d met the time before. They cared about labels and words and how we spoke about our children and families.

Someone would point out regularly that the group was about more than support. It was advocacy, problem solving, education, outreach, stigma busting and trying to change the way systems treated our children and us.  “Calling it a support group,” one mom used to say, “sounds more like a pity party than what we really are.”  Whatever we called it, it continued on for years, adding new members and saying goodbye to others as their children became adults.  Since then, the rules have grown for support groups, but what parents need from them has stayed the same.

Originally, support groups were never intended to be a service.  They were a place where people learned from one another, not just the how-to’s and the go-to’s but emotional learning.  Anger was shared and so was grief and we learned that they were okay, everyone felt them push insistently into our day no matter how we pushed them back down.  Sometimes you let those feelings flood you and then you’d release them (at least a little) and other times you learn to harness them and use them to make changes or challenges barriers.

Support groups were a place where leaders were born and then nurtured.  Someone would develop expertise, hard won almost always, in special education or insurance advocacy or navigating the courts and they would teach and lead others to success.  Someone else would be a little further along in their emotional journey and learn how to change minds with their story or create change with their advocacy.  Another would know where the resources were, such as a resale shop so your child’s expenses didn’t break the bank this week or a community class where your child would be welcome.

I never thought I would be a leader but I took it on.  I shared my experiences and was nakedly honest about my failures as well as my successes. A group member would say, “I never thought I could say that in a school meeting.”  Another person would muse, “I never thought of it that way.”  Maybe the best comment of all was, “When you said that, it must have changed the meeting.” A good leader has to be vulnerable as well as strong, I found, and a perpetual learner.  There is practically no chance we can ever learn everything we need to know.

Originally support groups were created to connect with families, connect families to one another and nurture parent leaders.  To make leaders, to encourage people to go forward, they need a safe spot to come back to, to tell their story and received cheers or sympathy.  They need others to have their backs and simply care.  Sometimes they need to regroup and brainstorm for the next step.

Social media has impacted both support and support groups and created new language as well.  There are threads on Twitter, where patient advocates take cutting edge medical or psychiatric information and get it out to people who have few other ways to access it.  (Who among us subscribes to medical journals?) There are Facebook pages with varying degrees of privacy and varying levels of member screening.  You might, for instance, find the person liking your post is not another parent after all.  People with similar diagnoses or problems to solve meet online, private message, email, face time, Skype, watch YouTube videos and blog.  Their goals may range from sharing information to sharing strategies.  They may offer support or mentoring. Like everything on the internet, you can access amazing and invaluable information or support or find the quality not worth your time.

About 3-1/2 years ago, I was at a health bloggers conference and met Susannah Fox, an advocate and scholar of peer-to-peer health care and a former chief technology officer of the U.S. Department of Health and Human Services.  She writes that one in four people in America receives information or counsel from someone with a similar condition, often online. “Few of us,” she writes, “can read everything about our condition. Those who have gone before us can help sift through the mountain of information for what’s most useful.” She is a strong proponent for patient advocacy or peer-to-peer healthcare and posits that we are in the midst of an online health revolution.

If June were to come over to me today, would she ask me to start an online support group?  Or maybe a series of videos or a chat platform? I wonder if it would be the same.

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4 thoughts on “Is it a support, education, leadership, networking or advocacy group?

  1. I run a parent support group and find that while information is available online, you have to filter it carefully as there is as much disinformation as information. I think that while you may make some connections online, there is no replacement for face to face empathy that develops at a support group.

  2. As a long time Family Support Group facilitator, I feel there’s nothing like the face-to-face interaction that goes along with attending a support group. Online support groups have their place, I suppose, but missing is the nuances and the flashes of hope, humor, grief, anger and pride that you see on the faces of the people that sit in the room with each other and share their experiences. Great post, Lisa!

  3. What a wonderful and important blog post, Lisa. I am in awe of what individuals can accomplish when they come together and support one another. Thank you for your leadership in this area!

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