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8/07/2008

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.

6 comments:

Elio Galluzzi said...

Jeanne, a beautiful series of articles, I have no suitable words to explain how precious your writings are.
Well done:)

Elio

Jeanne said...

Elio,

Thank you so much for your kind words! I really appreciate your support!

It took a bit of courage for me to cover all of the details I did but I'm passionate about helping endometriosis patients and other chronically ill individuals!

Your words are precious to me! :)

Thank you for visiting my blog. Have a great day!

Jeanne

tjhatton said...

Jeanne, very well written! I too can recall the high school and start of college days. It is nice to know there is life later, and it very well can start with a help group. With endometriosis we can not simply turn the switch off. Therefore we deal and what better then with others who will share. I will be recommending this site. Thank you for sharing!

Jeanne said...

tjhatton,

Thank you for your thoughtful comments!! Help groups really are wonderful. I agree that networking with fellow patients is so important and helpful! Thank you so much for your positive feedback. I really appreciate it! :)

Jeanne

Mckay K said...

Jeanne, you are such an inspiration to young women. It is very difficult to re-live unpleasant moments. But, I am glad you chose to open up your very painful yet interesting life.

Having attending support groups, in the past, I believe they are imperative in giving you a sense of belonging. That feeling of inclusiveness is important, when you are ill and you feel like the rest of the world is passing you by.

This is, also, great information on setting up a support group for any illness! :-)

Jeanne said...

Mckay k,

THANK YOU, as always, for your very kind words!! I have gotten SO much out of support groups! They are such valuable resources!

If the tips on starting a support group can inspire just one person to start a group, I would be SO thrilled!

I really appreciate YOUR support!! :)

Jeanne

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