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!!

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"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
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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.

Endometriosis Blog: SEVENTH Anniversary Of My Local Endometriosis Support Group!!!

On August 8, 2001 we held our first local endometriosis support group meeting.

Prior to the meeting, I had done various things to create awareness about our new group.

I hung fliers in various places (the library distributed it to every library in the county and even hung them up for me!), notified the nearest city's major newspaper to have my group added (for free since we are a nonprofit group) to their health calendar, distributed brochures to my doctors' offices, & called women whose contact information I had gotten from The Endometriosis Association (which I was able to obtain by applying to be an Endometriosis Association support group leader, getting approved as one, and agreeing to keep women's contact information completely confidential.

When I called the women on the Endometriosis Association list, I received a warm welcome. I told them about the new group and asked them if they'd like to be added to my email mailing list. Most said yes.

I used email (with a distribution list to save time and send one email to the entire email mailing list). I used email to send meeting times, location, and directions to our meeting place.

Once I had made calls to everyone on the list, I had about 23 women signed up for the notification emails. Today my email mailing list has grown to 42 women. Many support group members don't generally make it to meetings but like to get the emails to stay in the loop about endo. Occasionally I send out info on endometriosis research and links to endometriosis sites.

In the last 7 years our group has been busy:

+ Our support group was featured on the local news

+ We (some group members) emailed a major newspaper that had written false and misleading comments about fibromyalgia

+ We shared information regarding hormone replacement therapy

+ We shared information about local physicians

+ We learned of a national news story regarding disability claims

+ We shared information about other local support groups that serve the needs of our endometriosis support group members (an infertility group, an interstitial cystitis group, and a fibromyalgia group are all available in our area)

+ I emailed a link of a radio program regarding interstitial cystitis for those group members who were interested (an excellent radio program!)

+ I passed along online newsletter from the Interstitial Cystitis Association

+ We shared information about making medical exams easier (especially pelvic exams)

+ We shared information about physical therapy for pelvic pain... (Contact The National Vulvodynia Association (http://www.nva.org/) to see if your area has this type of specially trained physical therapist

+ We learned of a website about adhesions

+ We shared information about medical research studies being conducted in our community (for endometriosis and fibromyalgia)

+ We shared information about the dangers of some health & beauty products (for everyone!) - but especially women with endo (see the following website for more information: http://www.cosmeticsdatabase.com/splash.php?URI=%2Findex.php)

+ We learned about a "last resort" surgery called presacral neurectomy from a group member who had the surgery

+ We merged 2 support groups

+ We got local TV stations to agree to air endo public service announcements

+ We generated awareness about endometriosis in our community

+ Occasionally group members even brought snacks to meetings!

+ We held a fundraiser and gave 100% of the proceeds to The Endometriosis Association (with the money we raised earmarked specifically for endo research)

+ We learned that many group members have vulvar vestibulitis or vulvodynia and that many group members get terrible migraines

+ We shared information about breast cancer (melanoma, ovarian cancer, and breast cancer are more common in endometriosis patients than in women who do not have endo)

+ Some group members signed a petition objecting to "drive through mastectomies"

+ We learned of 2 websites... one about alternatives to hysterectomy and the other to support women who had gotten a hysterectomy

+ We had guest speakers speak on nutrition, relaxation techniques, Chi Nei Tsang, acupuncture, endometriosis (a gynecologist gave a fantastic presentation!), environmental concerns specific to endometriosis patients, etc.

+ A group member shared a recipe book that might be helpful for endometriosis patients

+ We organized an email campaign to FDA - to request labeling and eventual phase out of PVC and DEHP from medical devices

+ Group members supported each other during difficult times (such as surgeries)

+ We shared info with each other regarding infertility HMO coverage

+ We donated a copy of The Endometriosis Sourcebook to a public library

+ We connected group members who had similar symptoms to one another so that they could support each other and exchange information

+ We learned of a study showing that chronic pain can alter the brain

+ We discussed co-existing illnesses extensively since many support group members have other illnesses besides endometriosis (ones related to endo)!

+ We shared information regarding a drug recall that impacted some of our group members

+ We shared information on books that group members found helpful

+ We supported patients who experienced miscarriage and infertility

+ We discussed prescription treatments, surgical options, and alternative medicine modalities

+ We created a website with information pertaining to the local support group (directions to the meeting location, a meeting calendar, links to relevant websites, etc.)

+ We shared links to news stories we'd seen on TV or in print

+ Patients have gotten connected with each other between meetings to discuss one patient's vestibulectomy (while another patient was trying to decide whether to have this surgery)

+ We LISTENED to each other!

***UPDATE***

RELATED (PREVIOUS) POSTS LINKS TO THIS ARTICLE INCLUDE:

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'll end this post with a quote regarding support & self-help groups:

"Mutual support groups, involving little or no cost to participants, have a powerful effect on mental and physical health... The psychological and physical health importance of this diffuse community is striking... The self-help movement, both in face-to-face and virtual arenas, has tremendous therapeutic potential."

From American Psychologist feature article "Who Talks?: The Social Psychology of Illness Support Groups" by K. P. Davison, J. W. Pennebaker, & S.S. Dickerson, (55) 2, pp. 205-217, 2000.

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

Endometriosis Blog: How Finding The Endometriosis Association & Participating In Endometriosis Support Groups Helped Me & Made Me A Volunteer!!

We’ll call post this “Part Two”:

I will pick up where I left off with the TUESDAY, AUGUST 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient “cliffhanger” post.

Here is where I left off:

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So please stay tuned to find out how The Endometriosis Association helped me to learn about the illness, get needed support, and feel less alone!!!
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If you have not yet read the August 5th post, you may want to read in reverse chronological posting order so that things are in context!

So once I had found the contact information for The Endometriosis Association in the Barnes & Noble bookstore, I went home and called them immediately. At that time, there was a phone number specifically for people who were new to The Endometriosis Association that took messages for call back. (I believe that there is just the main number for The Endometriosis Association now)…

The Endometriosis Association can be reached at:
Phone:(414) 355-2200
Website: http://www.endometriosisassn.org/

I PERSONALLY HAVE FOUND A WOMAN NAMED SHELLEY HOUCHIN TO BE EXTRAORDINARILY HELPFUL AND SUPPORTIVE! SHE IS THE SUPPORT PROGRAM COORDINATOR AT THE ENDOMETRIOSIS ASSOCIATION HEADQUARTERS. I WOULD HIGHLY RECOMMEND CONTACTING SHELLEY IF YOU HAVE ANY QUESTIONS ABOUT ENDOMETRIOSIS SUPPORT GROUPS OR THE ENDOMETRIOSIS ASSOCIATION IN GENERAL. THIS WOMAN IS VERY PASSIONATE ABOUT HELPING ENDOMETRIOSIS PATIENTS AND IS A FANTASTIC RESOURCE! SO IF YOU CALL OR EMAIL THE ENDOMETRIOSIS ASSOCIATION, JUST ASK FOR SHELLEY HOUCHIN AND SHE WILL BE VERY HELPFUL!!!

Anyway, someone called me back shortly after I left my message in 1992. The woman was very helpful! Since this conversation took place back in 1992, I don’t remember the exact details but I know she was very nice. I do know that I ended up joining The Endometriosis Association as a member. My membership meant that I began to receive The Endometriosis Association’s newsletter.

The newsletters were the first time I heard stories from women like me who were also endometriosis patients! There were letters that endometriosis patients had written to The Endometriosis Association published in the newsletters and the stories sounded like I could have written them!!

Around this time, I became aware of a book which was published in 1987 called Overcoming Endometriosis by Mary Lou Ballweg. (Overcoming Endometriosis was followed by The Endometriosis Sourcebook by Mary Lou Ballweg and The Endometriosis Association in 1995 and Endometriosis: The Complete Reference for Taking Charge of Your Health by Mary Lou Ballweg and The Endometriosis Association in 2003).

Overcoming Endometriosis, which I read in 1992, helped me to realize that there were many fellow endometriosis patients in the world. Between the newsletters and the book, I was starting to feel less alone.

Somewhere along the line it came to my attention that there was an Endometriosis Association support group right in my city. I had never been to a support group before and didn’t know what to expect! I was quite nervous about calling the Group Co-Leader but I was very ill from endometriosis and so I got past my nerves and placed the call.

I sure am glad I made that phone call!!! The Group Co-Leader was very warm and welcoming. She told me about the support group: where & when meetings were held, some idea of what meetings were like, some of her own personal experience as an endometriosis patient, etc.

IT WAS SUCH A GREAT PHONE CALL! I KNEW THAT I HAD TO GO AND CHECK THE SUPPORT GROUP OUT!

At the time I was a shy, quiet 23 year old with zero knowledge of support groups... back in 1992. The idea of going to a meeting where I would talk with people I didn’t know about my endometriosis made me apprehensive. However, the phone call from the welcoming Group Co-Leader helped a great deal! Also, I was too sick NOT to try a meeting! What did I have to lose? I knew I might very well have a great deal to gain! If the other support group members were even half as nice as the woman I had spoken with on the phone, I’d be foolish not to go!

So the next meeting night arrived. I went to the meeting by myself. This particular support group used a conference room in a hospital for their monthly meetings. Still a bit nervous, I had no doubt that I was doing what I needed to do in order to find the support I so desperately needed!! I walked into a small room with about 3 women sitting at a table. It was still a few minutes before the meeting was scheduled to begin. I believe one more woman arrived after me and then we started the support group meeting.

What a breath of fresh air!!! To sit in a room of women who all automatically “got it”, who all had some idea of what I was experiencing, and some of whom shared many symptoms with me... it was so exciting! I learned a great deal in just that first meeting. This particular group had each woman take turns (only if they chose to speak) talking about any endometriosis-related topic she wanted.

The women typically began by introducing themselves, when it was their turn to speak, for the benefit of new meeting attendees like me. Some told their “endo stories”… brief summaries of their endometriosis journeys to that point. Some talked of having trouble deciding whether to have another laparoscopic surgery or not. Some talked about prescription treatments they were on or had tried in the past. Others talked about alternative medicine (a term that was new to me at the time). It was made clear that I could just listen if I wanted to and that I didn’t have to talk.

By the time it was my turn, I was ready to talk!! I was still shy and quiet but hearing the other endometriosis patients’ stories helped me to relax and open up. I explained how I found the group, that I had talked to the Group Co-Leader prior to the meeting, and that I was very much in need of support! I explained that I had been recently diagnosed with endometriosis and was just beginning to learn about it!

The welcoming response I got from my fellow endometriosis patients was touching and comforting! I felt like I really “belonged” there and this was only my first meeting!! I was very glad I “took a chance” and “dragged myself” to that first support group meeting.

From that point on, I went to every monthly meeting I possibly could! In fact, I scheduled around the meetings as best I could. I was working many hours at the time and it wasn’t always easy to fit the meetings into my schedule. I did my best, though.

I MADE TIME FOR THE SUPPORT GROUP MEETINGS!!!

The support group taught me so much and so quickly! It was a whole new world! I didn’t feel like it was “me against the world” anymore! I finally knew the name of my illness, I was learning more about it rapidly, I got tips on finding a better doctor than the one I had at the time (which was sorely needed!), etc. I was very pleased with the amount of information and support I received at these meetings.

Most months we had 2-6 women in attendance. That was plenty! In fact, we had to keep our turns brief enough to allow each person the opportunity to talk. The meetings were 2 hours long and we often occupied the room right until it was time for us to vacate it!

Now I will fast forward a few years. I accepted a job in a new city. While the city was fairly large, I didn’t know if there would be support group available there. I was pleased to discover that there was. Unfortunately, I didn’t make many of the meetings in that city because I was working a very unbalanced schedule of 80+ hours a week (on average). I did make a couple of meetings in that city, though.

Two years later, I returned to my hometown and resumed the meetings at the location I had originally attended. The group was as warm and welcoming as ever! My work hours were cut way back and I began attending almost-monthly again.

Now I will fast forward another 3 years. I got married & moved again to a third place. This time it was not a city. The rural area where I had moved to did not have an endometriosis support group very close to where I lived. There was a support group in the nearest city AND the one I had just left. The driving distance was a bit much for me to attend either one very regularly.

I did not even know about the endometriosis support group in the nearest city to where I had moved; I found out about it later on when I had decided to form a group closer to where I lived!

So, in the course of starting up my own group... I became aware that there was an endometriosis support group in the city closest to my new home (slightly closer than the group I had just left). I spoke to that Group Leader and I contacted The Endometriosis Association’s headquarters for information on how many women lived near my rural area and whether or not it made sense to form another support group. They sent me data on members in my area and women who had contacted EA for information. Many were "on my side of town", as it turned out.

To make a long story short, I decided after speaking to the Group Leaders from the two nearest cities that it would be worth forming a new (additional) group. The Group Leader from my “new city” was very helpful!!! She gave me lots of tips for how to start a new group! She recommended an EXCELLENT class given by the local Mental Health Association called “Facilitating Self-Help Groups”.

Please see my previous posts:

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

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

So I attended the class, talked with the Group Leaders from the endometriosis support groups on either side of me, and formed a new group.

This Friday will mark my support group’s SEVENTH anniversary! Unfortunately, the other two support groups no longer meet. Like so many groups around the country, these groups decided to discontinue their meetings.

For awhile, we had all three groups active and running. It was great because I had 2 experienced Group Leaders to bounce things off of and they bounced their ideas off of me too.

The group in my “new city” closed first. I was sad to see it close. The very experienced Group Leader had stepped down to take a job out of the area. I asked one of my most enthusiastic support group members if she’d consider stepping in so that we could keep both groups active. This would give women in the area two locations to choose from. We ran in tandem for a little while but her group closed and I absorbed any interested members from her group into mine.

Awhile later, the group from my “old city” closed down as well. This was very sad for me because that group meant so much to me! There were still members in it from when I joined in 1992! Unfortunately, the remaining group members weren’t attending often enough & regularly enough for the group to stay active.

This left me with the only active group in an area covering two moderate sized cities and their surrounding areas. I was more determined than ever to attract new members and keep my group from closing down as the other two had.

I am still in touch with the former support Group-Leaders from both cities!

It has been a couple of years since then. Our smallest meetings consist of two people. Our biggest meeting ever had 15.

EVERY SINGLE MEETING IS WORTHWHILE, REGARDLESS OF HOW MANY WOMEN ATTEND!

I had a couple of “no show" meetings about two years ago. That was when I implemented a new policy that if I didn’t get at least ONE person to RSVP that she was definitely planning to attend, I would simply cancel the meeting. I learned that sitting in an empty room waiting to see if anyone will show up is no fun. I haven’t had a “no show” meeting since!! Either we get 2-5 women (at an average meeting,including me) or I cancel 24 hours in advance with the building/meeting room where we meet. Problem solved!

I encourage you to read the related posts I mentioned above. Who knows?? Someone reading this may get inspired to find a local endometriosis support group, attend meetings, OR start a group if there isn’t one that is nearby!!

I have also created a poll regarding self-help groups and support groups! Please see it in the right sidebar of this blog and exercise your right to vote for the option that applies to you!!

I hope that SOMETHING in this post, in the other two recent posts about self-help groups/support groups/volunteering, and/or in the “PART ONE” post to this one: TUESDAY, AUGUST 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient will be helpful to ENDOMETRIOSIS PATIENTS AND OTHER CHRONICALLY ILL PATIENTS IN NEED OF SUPPORT!!!

You may have an appropriate support group in your backyard and not even know it!!!

I will close this post with a quote that was recently brought to my attention. I believe it’s perfect for this post:

“One of the most important capabilities of community self-help groups is that ordinary people can develop such groups in their local communities when none exist, and subsequently their group usually serves as an extraordinary resource to many in that area for several years. I still find it amazing that to start a group, a person doesn't need a grant, an agency, or even an office - just the inspiration and a few other people who share their experience and hope. What significantly helps in providing such inspiration is a person's knowledge of an existing national organization or a model group, which can provide them with basic information so they don't have to ‘re-invent the wheel.’ "

This quote is attributed to E. Madara, "Mutual Aid Self-Help Group Developments” Community Psychologist, 39 (3), Fall, 2006, p. 21.

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

Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up

This is a follow-up to the following post:

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

Since posting this article, I have received some fantastic information offline that I'd like to share with you about self-help groups and support groups.

First, I would like to re-emphasize that if there is not an endometriosis support group in your area (or a support group for other chronic illnesses)... that you might want to give serious consideration to starting one yourself!!

If you don't know where to begin finding or forming a group, here is an organization that can help!!!

http://www.selfhelpgroups.org/

I would also like to include here the first of many interesting quotes that were sent to me on the topic of self-help and/or support groups, their value, and the research that supports their worthwhile contributions to those who need them (not to mention the health benefits that volunteering provides to the person volunteering)!

IF YOU NEED SUPPORT AND DON'T KNOW ANYONE WITH ENDOMETRIOSIS IN YOUR LOCAL AREA, JOINING OR FORMING A SUPPORT GROUP FOR YOUR ILLNESS IS EXTREMELY HELPFUL, IF NOT LIFE-CHANGING!

Anyway, I will close with one of the quotes that was recently sent to me. I received a treasure trove of quotes. So you can expect to see many more where this one came from:

"Mutual help groups are a powerful and constructive means for people to help themselves and each other. The basic dignity of each human being is expressed in his or her capacity to be involved in a reciprocal helping exchange. Out of this compassion comes cooperation. From this cooperation comes community."

- Phyllis Silverman, Ph.D., Dept. of Psychiatry, Harvard Medical School, in The Self-Help Sourcebook, 6th Edition, 1998, p. 26 (Our Clearinghouse provides free copies of the 7th Edition of our Sourcebook to those college faculty, who wish to use/distribute free copies to any of their classes. Anyone can use our more up-to-date, free, online keyword-searchable database of national, online, and model groups. Just go to www.selfhelpgroups.org click on the "American Clearinghouse," and enter your keyword in the yellow box).

Self-help and/or support groups are invaluable to endometriosis patients!

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