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10/08/2008

Endometriosis Blog: Obituary Of An Endometriosis Support Group Or Beginning Of A Better System?

Fasten your seatbelts! This will be a long post because it's about a topic very near and dear to my heart. So please bear with me!! When I get emotional, I get even wordier than usual (hard to imagine, I know)! :)

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If you're having trouble slogging through this whole post, please consider checking out the 5 related links near the end of this post. I believe many readers can relate to them!
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Before I begin with a bunch of questions (questions I'll pose below) or proceed to write my local endo support group's "obituary", I want to begin by focusing on the positive!!!

I AM VERY THANKFUL AND GRATEFUL FOR HAVING HAD THE OPPORTUNITY IN THE LAST 7 YEARS TO MEET AND GET TO KNOW SOME OF THE MOST FANTASTIC WOMEN I HAVE HAD THE PLEASURE OF MEETING ANYWHERE, AT ANY TIME, IN MY LIFE! I HAVE FOUND NUMEROUS ROLE MODELS WITHIN MY LOCAL ENDO GROUP: ROLE MODELS FOR COMPASSION, "GIVING BACK", SHARING THEIR PERSONAL STORIES FOR THE BENEFIT OF OTHERS, ETC. I AM SO HONORED TO HAVE MET SO MANY OUTSTANDING WOMEN WHO ARE COURAGEOUS, STRONG, THOUGHTFUL, AND WHO PERSEVERE THROUGHOUT OFTEN DAUNTING SITUATIONS AND DEBILITATING SYMPTOMS. THESE WOMEN ARE INSPIRATIONAL AND HAVE ENRICHED MY LIFE AND THE LIVES OF OTHERS IN SO MANY WAYS!!!

Is online support the "wave of the future" (as some have suggested to me in recent weeks)? Can online support replace in-person support? Does it have to be either/or???

Or is a *combination* of online support and in-person support the optimal situation??? (My personal opinion on that last question is that a combination IS best when at all possible... but I'll get into more details below. In-person support is REALLY powerful. Having experienced both, I see the value of each).

Are in-person support groups phasing out in general? Or does it depend on factors like geographical area, the condition/illness requiring support, the nature/severity of the illness/condition/situation for which the support provided by a group, gas prices to get to meetings, people's work schedules, people feeling too overwhelmed or exhausted to add one more thing to the schedule(!), or a combination of these and other factors?

First let me share some fond memories. Our group has helped many women find ---

+ EACH OTHER!!! I have met some of the most wonderful, caring, supportive, well-informed, strong, compassionate women in our support group that I have ever met anywhere in my 39 years. I will always treasure the special moments of shared support, compassion, information-sharing, and grace that I have witnessed in the past 7 years. Our support group has helped many women in meetings, between meetings, in person, by phone, and via email. The last phase of this in-person support seems to have led me here. While I didn't know it at the time that I started this blog in June, it may well provide online support to those who cannot attend in-person meetings regularly (for a variety of reason which I'll talk about separately).

+ comfort, support, healing

+ the ability to find high quality doctors in our area

+ validation/understanding/decreased isolation or loneliness

+ links to other support groups relevant to their condition (i.e. fibromyalgia, interstitial cystitis, and infertility support groups)

+ articles about endometriosis and related conditions, relevant news stories/research

+ links to other helpful resources relevant to our group members (i.e. support for group members who have gone through breast cancer... which endo patients are at increased risk for)

+ opportunities to connect with other women who share much in common with them (pain symptoms, marital strain, infertility, micarriages, etc)

+ a venue for learning about alternative treatment options that might not have been discovered otherwise

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Obstacles for in-person support...

Here are the most common reasons endometriosis patients have outlined for me as reasons its difficult to attend support group meetings:

(1.a.) TIME. Time is so precious nowadays for everyone. It's extremely difficult for endo patients to simply add one more thing to their schedule.

(1.b.) I am listing "TOO SICK TO ATTEND" as tied for first place because it is just as common a reason for women not being able to attend meetings!

(2) Women who are feeling better and would like to stay on the mailing list but do not attend meetings regularly because they don't need the support currently. This is understandable! (Who wants to drag herself to a meeting when she's feeling better when she could be at home spending that time with her family, curled up her in PJs reading, watching TV, etc.)

(3) Patients whose needs have essentially been met and are doing pretty much OK but wish to remain on the mailing list to "stay in the loop"... and just in case they should need support/info down the line.

(4) Women who had quite a drive to meetings and either have issues with drowsy driving associated with medications, have trouble with gas prices making the drive prohibitive, etc.

(5) Patients who have been fortunate enough to conceive sometimes have difficulty obtaining childcare so that they can attend the meetings.

Within the group of women who find time their biggest challenge for attending in-person meetings... there are many subcategories. Women have work scheduling conflicts, women have other commitments on the same date, women need that time during the meetings to recover from working all day and adding a meeting after a full work day is totally beyond their capabilities or just plain impractical, etc...

This leads into category (1 b). Many women are simply TOO SICK to make it to in-person meetings. This has been the most heartbreaking part of the last 7 years for me. The very women who express the GREATEST need for support and who are VERY interested in attending meetings often are simply to sick to attend. Over the last 7 years, I have tried to be as available as possible as possible to group members between meetings because I knew that some patients simply can't make some or even any meetings due to the very illness for which they desperately want/need support.

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As far as the questions I posed at the start of this post, I can't answer all of these questions. What I can do here is simply share the story of one local endometriosis support group. Much of our local support group's story has been covered in previous related blog posts. I'll list these at the end of this article and I strongly encourage readers to check them out! There is a great deal of information in them that I believe readers may find interesting and/or helpful regardless of whether they have ever or will ever participate in "in-person" support groups!

There's a great deal to cover here with the group having provided support to local endometriosis patients for 7 years. If I cover it all in this post (especially when I detailed it previously anyway in other posts) this post will become WAY too long. So I'll skip the details for now and refer readers to those posts for more information about the wonderful things our group members DID accomplish while we still had regular monthly meetings.

While I will miss having monthly meetings and the enormous opportunity they provided to help others and to learn a great deal from fellow endometriosis patients, I realize that sometimes "good things must come to an end". While I accept the fact that we will no longer have monthly meetings at the location & time we've met for 7 years... I have faith that we have a core of very interested support group members who will find more creative and flexible ways to have some in-person support... just not necessarily as often or in as structured a fashion.

I am at total peace with the changes in how we'll proceed from here and (despite my gloomy post title!) that this change is for the best and I'm actually feeling relief that I no longer have to struggle to try to "hold the group together" in its previous form. Group members know where to find me and now have some additional contact info to communicate with other fellow group members who have shared their contact info. I have done everything humanly possible to keep the group afloat in "traditional form"... especially since the endo groups on either side of me closed within the last few years and our group has been the only remaining endo support group in our part of the state.

I just keep telling myself that a former endo support group leader who sent me a compassionate, thoughtful email about the potential "closing" of the local group had a good point... that online support (blogs like this, messages boards, websites for organizations who deal with endo support, research, information, etc.) may truly be the "wave of the future".

My personal belief is that some occasional in-person support is a fantastic addition to the great online support available in so many formats! I have felt the positive energy in the room when the group members present have "aha" light bulb moments (as Oprah would call it) or when group members realize, "oh, she 'gets it'... " --- or "these people really 'get' what I'm talking about"!

I keep local group members' contact information 100% confidential and always have. With the traditional group format unraveling, I have been asking interested group members for permission to share their contact info with the group. In this way, the remaining "core" of interested group members can remain in contact with each other without me necessarily needing to be the "gatekeeper".

This will assist me in engaging in more self-care/less time trying to "save the group" and will allow for a better sense of "ownership" or belonging for the core members to communicate with each other - and - for all of us to divide the responsibilities of organizing any in-person, informal meetings.

We can meet 1:1 or in small groups at locations, dates, and times of the subgroup's choosing. We can have the meetings really informally at coffee shops... just hang out and chill. Like a "girls night out" where we happen to all have endo and we spend some time talking endo and some time just having fun.

In the last few weeks, it became apparent that our group was potentially heading for "extinction" in its current form and I sounded the "alarm bells" to let the group know where things were potentially headed... at least regarding the format we had become accustomed to.

I went through feelings of sadness and loss. I know there is a need for a group like this because I got 2 calls last week from new members. Calls don't always translate to meeting attendees, though.

At the same time our current meeting schedule is just impractical (on many levels) and it's not fair to the wonderful library that has provided free meeting space for 7 years to call and cancel as many meetings as I have in the last year when the library is turning others away from using the room.

However, in addition to feeling sadness and concern that women who haven't already found our group may have a much lower chance of finding us now, I have received some unbelievably supportive and heartwarming emails and calls from local group members. This has lessened the blow of the group "dying" (at least "dying" from its current form of monthly meetings). With all of the great suggestions and supportive/helpful comments I have received in the last few weeks, I know that existing support group members who care to stay in touch will and that those whose needs have been met or who don't find attending in-person meetings practical for whatever reason WILL still get the support they need within our community.

The saddest part for me is not knowing how to reach out to those who hadn't yet found us. For example, women who have not yet been diagnosed and who will look for an endo support group in the future in this area won't be likely to find us. This was hit home recently when the local city newspaper printed its quarterly "health section" newspaper pullout that features support groups like ours (for free) to inform the community.

As I touched on earlier, I got calls 2 days in a row from potential new group members recently and had to explain that I wasn't sure if our next meeting was going to happen or not. (I had called an "emergency meeting" to discuss our group's future. It was to be held tomorrow night. I have cancelled it). While a couple of group members had replied "maybe" to the meeting invitation RSVP, a handful had said no, none had said yes, and the vast majority hadn't responded at all.

I just knew it was time to discontinue our monthly meetings. This doesn't mean we can't "morph" into another format. I am hopeful that the small but determined core of local support group members who have contacted me will find creative ways of staying connected.

I have received some VERY thoughtful, considerate, compassionate emails and calls from local support group members who wish to continue to stay connected with other endo patients in the area, who reassured me that they have found the group very helpful, who made suggestions such as virtual meetings or meeting at a coffee shop on a quarterly basis, who like staying in the loop with the emails I send, etc.

We may not meet every month in the future and we may not meet in the same location as before. However, based on the feedback I've gotten from our group members I am confident that there is a relatively small but interested core of our local support group members who will stay in touch, continue to network with each other, keep sharing our success stories & our challenges, and continue to belong to a group of women committed to staying connected.

OK. Now I'm going to do the "obituary" of our "traditional in-person monthly support group".

Then, more importantly, I will share hope for the future of continuing in-person support as a supplement to online support and and as adjunct to the information provided by healthcare providers.

We'll quickly cover the past first and then get into the future. I'm determined to focus on hope and positivity once I get through this quick "obituary". I just need the catharsis of getting through the sad part before I can move onto the happy/hopeful part. So bear with me.

On August 8, 2001 our local endometriosis support group held its first meeting. Since then we have helped dozens of endometriosis patients in our community. Like so many support groups around the country, we have had our struggles over the years with low turnout but have managed to stay active with monthly meetings for 7 years.

While many women expressed great interest in our group, our monthly meetings got smaller over the years. The number of group members on our mailing list went up and down over the years (people moving away, new members finding our group, women deciding they no longer needed support, women returning to group meetings when their symptoms flared or they needed to make decisions such as whether to have surgery) but our mailing list averaged about 40 women in the last few years. (We started out with about 20 women on the mailing list back in 2001). That's not bad for a city the size of the area this group has served.

I believe this may well be the death of a traditional support group and the beginning of a new era of support... My hopes for the future of our support group restructuring into something more workable for its members are strong.

I mentioned above that I would be sharing HOPE for the future of continuing in-person support as a supplement to online support and and as adjunct to the information provided by healthcare providers.

My personal belief is that the majority of Traditional Western Medicine healthcare providers are not GENERALLY inclined to provide much, if any, information regarding alternative medicine options. One of the biggest benefits of our group for members was access to high quality info on alternative treatment options. Group members learned about acupuncture, physical therapy for pelvic pain, Chi Nei Tsang, nutritional changes that might be helpful, homeopathy, aromatherapy, info on environmental impacts on endo patients and their fertility, the benefits of massage therapy, and many other modalities that their healthcare providers might or might not have made them aware of. I believe alternative medicine was one of the most interesting topics discussed in our meetings. I certainly got great feedback from members who tried new treatments and got great results.

Please see the article below. It contained FIVE related articles to this one.

Friday, August 8, 2008 Endometriosis Blog: SEVENTH Anniversary Of My Local Endometriosis Support Group!!!

The 4 links within the article listed above are:

Monday, July 28, 2008 Endo Blog: What Is “Self-Help”?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??

Monday, August 4, 2008 Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up

Tuesday, August 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient

Thursday, August 7, 2008 Endometriosis Blog: How Finding The Endometriosis Association & Participating In Endometriosis Support Groups Helped Me & Made Me A Volunteer!!

I have been a member of a "traditional/in-person" endo support group (here or in other cities where I lived previously) since 1992, when I was first diagnosed. I will miss the monthly meetings but I look forward to staying in touch with the numerous amazing women I've met through the group. These are women I almost certainly wouldn't have met any other way. Many are lifelong friends now!!! While I will miss the structure of monthly meetings, I have every confidence that many of our current group members WILL stay connected and continue to give one another high-level, compassionate, meaningful support.

So with this "endometriosis support group obituary", I'm sad but I'm also very hopeful. This is a bittersweet time. No matter how frequently, or infrequently, I have contact with members of my wonderful local group... I know we've helped many people. In addition, I know this blog will continue to help people online. Not only does this give support to women without them having to leave their homes but it reaches a worldwide audience and has already given me an awesome opportunity to connect with awesome readers of this blog and fellow bloggers (chronically ill or otherwise)! I am very grateful on so many levels.

I encourage readers to comment on this post! Maybe your local support group is struggling and you are looking for ideas. Maybe you have used online support only and have never tried in-person support or it's not available in your area. Maybe you have used in-person support in the past but haven't used it recently. Maybe your local group (like so very many endo groups) closed due to low attendance. I'd love to hear your feedback!!

In a funny way, I'm actually looking forward to this new chapter. I truly believe this is what's meant to be at this time and I'm embracing the opportunities it provides. I have taken some time to accept it and make peace with it and I really do see it as an opportunity rather than a "death" of our group... in spite of my post title. That title was a reflection of the sadness factor but I'm honestly looking forward to what good can come out of this transition for our local group. Who knows where this could lead? Maybe having a more flexible time/date/location based on who wants to attend a particular meeting will increase participation? You never know!

THANK YOU to my local support group members for being so thoughtful, informative, strong, and supportive. You all have a special place in my heart!!!! :)

I have loved the opportunity to meet so many incredible women through this group!!!

Nothing will ever take away the amazing, close friendships I have made with other endo patients right here in my community. Their kindness and selflessness are unmatched and I am so very grateful!!

***
"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has".
-- Margaret Mead

***

Our group has improved the lives of many women and their loved ones! We should look at the positive things we've accomplished AND look ahead to the additional positive things we'll accomplish in the future!!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

4 comments:

Yaya said...

Jeanne,
It is sad to see the Endo support group fade away. But like you said, online support is the wave of the future.
I truly believe that a support group for a chronic illness is just so hard to prepare and commit to since our symptoms can come at the drop of a hat.
I certainly don't think online support can replace in-person support because going to those meetings are phenomenal. I always walk away enlightened.
I understand having to disband the group. You have put so much time and energy into it and I want you to know that I really appreciate and thank you for everything.
Alicia

Jeanne said...

Alicia,

We'll see if I can set a record for longest comment field ever... (ha ha). I wonder if Blogger has a character limit for this field. We'll see! So much to say!

It's funny but in the last few weeks I honestly have gotten past most of the sadness of the group "fading away" as we have known it. I think this is because I truly believe that a number of us WILL stay in contact and continue to network with each other. It's true that symptoms often come up for group members at the last minute that prevent them from attending a meeting that they wanted to attend and had planned to attend. It's really common!

I totally agree with you that online support can't replace in-person support. The positive energy generated in meetings when women get to just sit in a room with fellow patients who really "get it" is irreplaceable. I always feel uplifted after meetings... no matter how sick or tired I was when I "dragged myself in" (which is often exactly how it's felt going in). I can honestly say that I have never gone to a meeting in 7 years that I didn't feel was beneficial for everyone there. (The only exception to that was a couple of "no show" meetings that happened before I implemented the infamous "RSVP rule" where I'd cancel any meeting where there wasn't at least one "yes" RSVP).

I learned that driving to an empty room was impractical and expensive (gas money). However, once I started that RSVP rule there were no "no show" meetings because I simply cancelled meetings that smelled like potential "no shows". I can honestly say, though, that the couple of "no shows" that occurred in a period of 7 years were not the norm. The norm was amazing meetings where women exchanged info, supported each other, shared their experiences with local doctors (positive or negative), enlightened each other about SO many alternative medicine treatment options, etc. It was only in the last year that the number of cancelled meetings indicated to me that the "traditional" in-person meetings really did seem to be "fading away". However, I honestly do believe our support group WILL live on in some form. I think we'll morph it into something more flexible. Where we'll meet and how often will be needs-based. We can pick the location based on who wants to be there & where they want to meet. We can pick the time based on what works for who is going to a particular meeting. We'll just be more flexible. I truly believe this is just a transition to a different level of in-person support than we have had before. I have gotten such heartwarming emails and calls from women who are truly interested in staying connected to fellow patients!!

If it weren't for the support group, I never would have met you!!! So the saddest part for me is that newly diagnosed patients will have a difficult time finding us. It is very sad to think that I may not meet people like you in the future because they can’t “find” us. It's not like I can put an ad in the paper for a particular location/time if we simply won't know that until the last minute. I'm going to try contacting the paper to determine whether they can simply update our health calendar entry to exclude the date/time/location portion and simply list my name and number as a contact for more info. That way, women who need support can still find us! So I think we'll find a way to keep the group from actually "disbanding'. I really do. There are enough interested women to keep those connections alive.

Elaine from the next group over from us (that closed a few years back) still meets for dinner or whatever with someone from the former group… years later. I believe that as long as women in the area desire to hang onto those connections and relationships that have been forged over the years, there will still be a "group". It'll just be less structured than in the past.

Of course I'm realistic enough to know that things just "won't be the same" as when we had reliable monthly meetings. I am encouraged, though, that Elaine and this former group member still meet monthly at each other's houses or out for dinner on approximately a monthly basis.

Chronic illness can be so isolating and I firmly believe that support is crucial. Family and friends can be supportive and helpful but rarely can they truly understand the way fellow patients can. They typically don't "get it" because they haven't had the firsthand experience to truly comprehend how debilitating (physically and emotionally) endometriosis and related illnesses can be.

This isn't to say that family and friends don't try their best to understand. Most of them certainly do! It’s hard on them too! The unfortunate thing is that the divorce rate is huge for chronically ill patients. Studies show that in a marriage with one partner chronically ill, the divorce rate is higher than 75%! This is truly alarming and I've seen many marriages result in divorce in the 7 years of the support group.

I believe one of the most beneficial purposes of the in-person group is to provide that outlet and forum for women to talk about their symptoms and emotions openly and be less likely to "contaminate" their relationships by venting to family and friends who just get saturated with so much talk of illness, pain, infertility, less ability to perform tasks that increase pain, etc.

I've seen women who desperately need to connect with fellow patients in order to prevent overwhelming their friends and relatives who often feel helpless and frustrated when they don't know how to help.

Online support is extremely useful. The trick is that face time DOES matter. In-person support is more "intense" and, I believe, potentially more "therapeutic" than online support alone.

I am determined to do my best to strengthen and maintain relationships with those women who DO want to stay connected. I have hope that we will keep the group functional. It will just morph into a different type of support.

Email and phone support (and this blog!) can bridge the gap between the in-person meetings but I truly believe we'll keep having some in-person opportunities. I have done LOTS of thinking about all of this in the last few weeks in particular… but for the last few months before that.

I have faith that the small "core" of the group who truly are interested in maintaining a connection with fellow patients will do so in some form.

I am SO grateful that I have been blessed to meet women like you that I am get teary-eyed as I write this!!! I still remember the day we finally met in person after so many emails and calls (before we began blogging). Email and phone are great but no replacement for in-person support. Meeting you in person made me cry (happy tears) because I finally got to meet you after so much out-of-meeting contact.

You have nothing to thank me for. I have gotten far more out of the group than I could have possibly given it. Yes, it took energy & effort. Yes, there were months I was so sick and so tired that I didn't know how I'd make it and months that my husband actually drove me to meetings because I was too exhausted to drive myself there safely.

However, as I said earlier... every meeting in 7 years left me energized, excited, comforted, and happy that connections were made... relationships were formed... and people were helped.

I have loved meeting people like you... people who made my day, people who care, people who inspire me, and people who meet challenges with courage, strength, and grace.

I will always view you like a

"little sister" no matter what happens to the group. Yes, I'm teary as I type. However... YES, I believe that the women who want and need support will make the effort to band together and continue to help each other.

Endometriosis and the many co-existing conditions that so often accompany it are draining, painful, tough on relationships, frustrating, etc.

In my mind, in-person support is unbelievably beneficial. I am pleased & encouraged at the comments made by group members who do not want to lose the ability to access in-person support. It is now in the hands of group members. My energy level can't sustain the group as we have known it.

However, I truly believe we aren't truly “disbanded". We're just transformed. It's all very emotional for me. The group has become a "sisterhood" of sorts. I am confident that we will maintain contacts and sustain our caring and sharing in the future. I accept what is happening and am oddly at peace with it. This is what's meant to be right now.

I'll always view you like a "little sister". This is all bittersweet but I really am hopeful. There's no way I can comprehend losing touch with amazing women like you! The spirit of our group as we have known it will live on as long as women stay in contact and make the effort to schedule in-person time.

Our group will survive. We are just transitioning to a different format. This is how it's meant to be.

I'm sorry if I'm repetitive or redundant. Blame it on sleep deprivation and the emotions of watching a 7 year monthly support group change into "the unknown".

I do have hope and faith that we'll just change the way we operate. The need for support IS there. The desire to stay connected is too. If we all put our heads together, it'll all fall into place. I feel an odd sense of relief. I think we just need to "go with the flow" and accept the changes as they come.

This group of amazing women has been such a positive force. I truly believe it will continue to be!

Jeanne :)

Kelly D said...

Thank you for posting the info on your blog. This was very helpful. I'm thinking that maybe a combo of online and in-person meetings might be the way to go. That way we could connect with the women who don't want to attend or don't have time. I'll approach my leaders in AZ to see if this is possible. I know the in-person support groups are difficult and generally have low attendance.
You've been so very helpful! Thanks Jeanne.

Jeanne said...

Kelly,

I'm glad it helped!

The combination method is great if it matches up with people/needs in your area. I'm a firm believer there's no substitute for in-person support!

Yet in this busy day and age, people have a harder and harder time breaking away from their absolute mandatory schedules... even if they REALLY want to attend in-person!

Online support can fill that gap.

The trick with the combination method is that once online options are available, the low turnout seems to sometimes melt away to no turnout...

However, your area and your group members could be totally different!

I have seen the infertility and endo groups here and the turnout issue is the biggest hurdle by far.

Your area could be totally different than mine, though! It certainly doesn't hurt to try the combination and see how it goes! That's the best of both worlds!

Best of luck!! Let me know if you have any more questions. In 7 years, I learned a lot. :)

Jeanne

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