First, let me thank you for the fantastic II awareness week!!! It was my first time participating and I found it extremely informative.

In addition to writing an endometriosis & chronic illness blog, I am a local endometriosis support group leader. I’m 39 years old and have had endo for 26 years. Our support group just had its 7 year anniversary. Unfortunately, our group is showing signs that it may not stay active…

With so many members quite ill plus the fact that people are so busy nowadays between family, work, and school obligations… it’s very difficult to get people gathered on the same date at the same time for a support group meeting. Turnout is really an issue!

I’ve seen endo support groups (on either side of me geographically) close down due to low turnout (or no turnout in some cases!) for monthly meetings. Our group is the only one remaining in our part of the state and I was hoping the day would never come that we’d need to close our group.

Our meeting tend to be 2-6 people when we meet. I have 40+ members on the email list for my group but I have to cancel some months when I have no “yes” RSVPs.

I’m too sick to drive in for meeting night to find an empty room. So if I get as much as one “yes”, the meeting is on, as scheduled. If I get a bunch of “maybe” answers but not a single “yes”, I must cancel because I’ve learned the hard way the likelihood of a “no-show” meeting in that case!

For many of the same reasons that were given for a “virtual II conference” last week, rather than an in-person conference, it appears times are changing to more online support and I wonder if our local support group will stay active.

This was a GREAT post which I have shared with my group. While I would certainly prefer that our local group stay active, I have made peace with the fact that this may not happen. (We’re having an “emergency meeting” in October to discuss the group’s future).

I have been asking group members and the former group leaders who used to facilitate groups near me for their ideas and feedback on our group’s future.

One former group leader commented that online support (such as my blog) may well be the “wave of the future” with people having such difficulty getting to meetings due to their illnesses, the price of gas, their busy schedules, issues obtaining child care for meeting nights, etc.

While I will miss the face-to-face interaction if my group closes, I will make peace with the fact that I did my best for 7 years to keep it active. If my blog is truly the way I can help people best, then that’s what I’ll focus my energy on.

I have a multitude of chronic illnesses and I’m realizing that perhaps I have overextended myself trying to blog and facilitate a support group too.

I was recently approved (FINALLY!) for disability and I’m hoping that I can turn blogging into a career since working at a “traditional job” has become physically (and mentally) impossible for me. I would really like to contribute to the family income and help with my catastrophic medical bills. My husband is really under stress!!

I really appreciate your well-written article. While I will be sad if my group closes, I know that I have given it my best. Your article has brought me some peace of mind.

It is now up to the group as a whole (not just me) as to whether the group will stay active. In the meantime, I’m working hard to get group members’ permission to share their contact info with fellow group members (info previously kept confidential).

That way, group members interested in staying connected with fellow patients will be able to do so in subgroups OR one on one… if the group does close.

Thank you for a great post! It really resonated with me after what our group has been through in the past 7 years…

Jeanne
http://www.endendoat.blogspot.com

This was an excellent article. In the past I have come across all the situations you mention, but your thoughts as to how to deal with them are compassionate and helpful. Thank you for a timely article and for all your hard work on IIAW conference. The whole thing has been a blessing and a learning experience for me.

Maureen Hayes
http://www.beingchronicallyillisapill.blogspot.com