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8/04/2008

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.

6 comments:

Mckay K said...

Self hep groups are empowering. They give us the tools we need to get through our personal situation.

Support groups are just as important. They let us know that; we are not alone, that we are not pretending to be sick in order to get attention, and that we can get through what ever it is.

Sometimes we cannot leave home to reach a support group. In addition to this blogging community, I find that the Cafe Chronique Community has been very helpful for me.

It is online and the people there are leaning on each other and getting through their problems.

There is no doubt that personal, face to face talking and touching is better. Sometimes we must settle for the next best thing.

Jeanne said...

Mckay k,

Yes, self-help groups certainly are empowering. It is so important to have resources to obtain the tools we need to cope with adversity in healthy ways.

My local endometriosis support group turns 7 years old this Friday. I can't tell you how much I have learned in that 7 years!

Support groups absolutely make us feel less alone. I've seen so many first-time support group meeting attendees' faces just light up upon meeting others who truly "get it"!!!

Often it's the first time they have ever encountered others who really understand.

It is terribly unfortunate when those who have the good fortune to be healthy very mistakenly assume that people who are ill are simply seeking attention! This attitude is VERY hurtful to patients!

I've seen plenty of people in TERRIBLE physical pain who actually experience MORE emotional pain from being judged this way than the physical pain itself!!

It's true that sometimes patients are too ill to attend in-person meetings. I have most certainly had plenty of women say, "I'd love to attend but I'm just to sick to make it" regarding endo support group meetings.

Others are simply too exhausted to fit one more thing onto their schedule.

Certainly online communities, blogs, message boards, etc. are very helpful. If I didn't believe that, I wouldn't be writing this blog!

I just checked out Cafe Chronique for the first time the other day after you had mentioned it. There was lots on it and I'll have to check it out more thoroughly.

There are so many great resources online to help the chronically ill. That's a big improvement from the pre-Internet days when I was first diagnosed with endometriosis!

I agree, though, that in-person interaction is very helpful!!!

I've had endometriosis support group members who I correspond with via email or on the phone for awhile before they make it to a meeting. That in-person meeting is just a whole different level.

That is one reason I have tried to encourage patients who do not have support groups in their area to take the initiative to start up a group themselves!!

Alternatively, those who DO have support groups near them really can do themselves a favor trying an in-person meeting and seeing what it's like!!

Online support can certainly be helpful. I have to say, though, that nothing can ever really replace in-person interaction... in my opinion anyway.

MANY times over the years, new support group members have said to me at the end of a meeting, "I really wasn't sure I was going to make it tonight because I'm in a great deal of pain and I'm very tired... but I'm so glad I did make it!"...

Certainly there are times when attending a meeting in person just isn't feasible.

However from what I have observed the VAST majority of patients who take the time and energy (which can be hard to come by, I know!) to attend a meeting almost ALWAYS come back for more meetings at some point.

That doesn't mean they attend every monthly meeting. However they rarely attend one meeting only.

To me that means they found getting to the meeting WAS worth the effort.

I have had so many women express relief in finding others who "get it" and finding others who know of local resources.

Online support is GREAT but local community groups can be excellent tools for finding local resources they might not have found any other way...

:)

Jeanne

Yaya said...

Mckay k-what a great word to describe self-help groups: "empowering"...that's exactly it. When I leave a meeting I feel better about myself and more knowledgable about what direction I need to take for myself and my health.

Jeanne said...

Alicia & Mckay k,

I agree with both of you that self-help groups and support groups are incredibly empowering!

They are fantastic resources for pooling information, getting support from people who understand, feeling less alone/isolated, and simply feeling more in control of managing the illness(es).

It really is amazing to make the switch from feeling helpless (as many people who don't have a support network feel!) to feeling empowered! It's a really great feeling!

It's also fantastic when patients who have gotten support from such groups to "give back" to others as well. Watching things come full circle in this way is a beautiful thing!

I always leave meetings feeling better than when I went in. Just being in the presence of people who "get it" is so helpful. Meetings are typically very productive with numerous pieces of information exchanged.

I agree that meeting with others "in the same boat" can help a person to get a sense of direction and proceed down the path to wellness.

Knowledge really is power. Self-help groups and support groups truly are an awesome source of knowledge from the people who are living it or have lived it!

Elisabeth Kuhn said...

I agree with everything you all said, and hardly know what to add... I had breast cancer quite a few years ago and found my own support group incredibly helpful, and affirming, and yes, empowering.

Most "other" people don't really "get it" sometimes what it's like and what we need. Plus, the extra hugs are very healing too, which is one big advantage of in-person meetings over virtual ones.

Another thing I found very helpful was writing. In fact, during the time when I was going through treatments, I started writing poetry.

Journaling has been shown to be very therapeutic, and I found that, for me anyway, poetry went even further because I was able to deliberately shape and craft my words, which gave me the sense that I was reclaiming my power over those experiences I wrote about.

Now think about the possibilities... Can you imagine the potential of incorporating some writing (and talking about or sharing the writing) into support groups? I think that could be very powerful!)

At the time I was too shy about sharing it with anyone, and it never even occurred to me to bring it to the meetings, but from what I now know (after doing readings and publishing my poetry), I wish I had shared my writing with my support group.

Thanks for your wonderful blog, and all my best to you,

Elisabeth

Jeanne said...

Welcome to you Elisabeth Kuhn!

PLEASE NOTE: Before I begin my reply to this comment, I would like to refer readers to my medical disclaimer at the top of my blog's homepage.

Elisabeth, I'm very sorry that you went through breast cancer but I'm happy to hear your support group was so helpful and empowering!

According to the Endometriosis Association: "women with endometriosis and their families have a greater risk of developing breast cancer, ovarian cancer, non-Hodgkin's lymphoma, and melanoma".

Just click on "Research and news" for more information about these findings:

http://www.endometriosisassn.org/

I agree that most people don't "get it" unless they experience it firsthand or possibly some extremely empathetic individuals "get it" to some degree by helping a loved one through it.

I agree with you that there are aspects of in-person meetings that are advantageous over virtual ones.

That is fantastic that you have found writing to be an outlet!! I can only imagine how your experiences have inspired your poetry. Feel free to share any poetry you'd like with me at: endendo@frontiernet.net if you choose. I'd love to read it!

Yes, journaling is also very therapeutic! Many people find this helpful! You made a great point that we hadn't talked about.

It's really awesome that you have been able channel your energy into your poetry. It is so wonderful that writing poetry has given you that sense of reclaiming power over the experiences you went through. That must truly be cathartic! I know that I have found writing this very blog to be therapeutic on many levels!

I absolutely agree with you that incorporating writing into support groups would be powerful. Again, I would love to see some of your writings. I'm sure your poetry would be very inspiring to many. While you may not have shared it with your support group at the time (because you were too shy to do so at that point), it's never too late to share your writings with others. I'm sure there are many that could still be positively impacted by it, regardless of when it was written!

Like you, I used to be shy. I know that may be hard to believe by reading my blog because I've really done a 180 degree turn on that!!

Endometriosis has truly changed my personality. It has forced me to become more assertive, stronger, to advocate for myself, to share what I've learned with others, to learn from other patients, etc. Endometriosis has “brought me out of my shell”, so to speak.

While there are certainly situations where I'm still shy (I'm the quiet one in the corner at a party!), I am very outspoken about endometriosis. I have learned that it is important to create awareness about endometriosis. So many women feel uncomfortable discussing their endometriosis with others, especially in public settings.

Our society seems to have conditioned women to feel discomfort when discussing the types of symptoms that endometriosis typically causes.

This is terribly unfortunate because by staying quiet and not shaking things up, the cycle of suffering in silence continues!

In my opinion, women with endometriosis should feel comfortable talking about their illness just like any other illness. It's striking to me that people in our society, generally speaking, can talk about a topic like breast cancer relatively freely but many still remain quiet about endometriosis.

Due to the nature of endometriosis (being a reproductive illness as well as an immunological and hormonal condition), women are often made to feel that talking openly about abdominal cramps, menstruation problems, bleeding problems, irritable bowel syndrome (a commonly co-existing condition for those with endometriosis), etc... is somehow inappropriate. Women often feel uncomfortable discussing their condition with others.

While there is a time and place for everything and some endometriosis symptoms aren't exactly "dinner talk", women should not be made to feel that they cannot talk about their endometriosis!

So many people in our society don't have any idea what endometriosis even is! Those who have heard of it often have heard the myths about endometriosis. This is very unfortunate.

Part of this is because the medical community as a whole doesn't promote endometriosis awareness as it promotes many other illnesses, such as how it promotes the importance of breast cancer screening.

Part of the "suffering in silence" for women with endometriosis certainly seems to be environmental/societal conditioning against patients discussing such symptoms publicly.

No should be embarrassed about having endometriosis! It is an illness like so many others that has a genetic component and no one should feel shame about it.

In my local support group, I have encountered several women who had difficulty talking about their endometriosis and associated symptoms even in a friendly setting of strictly endometriosis patients. They explained that they were brought up "not to talk about these things".

I'm certainly not placing any judgments on others. It's actually quite common for women in our society to have been raised with some degree of this fear to discuss the symptoms of endometriosis openly.

My belief is that awareness is crucial for any illness. Imagine if breast cancer screenings weren't so publicized, just as an example. Surely, women would be diagnosed much later with terrible consequences for the lost time that occurred by delayed diagnosis.

Part of the problem with endometriosis is that the method for diagnosing it involves surgery. Many doctors (and patients) are reluctant to go the surgery route due to concerns about scar tissue, adhesions, recovery time, etc.

While I don't think any decision about surgery should be taken lightly, since a laparoscopy is the means for properly diagnosing endometriosis... I believe it is helpful to get a proper diagnosis in order to get appropriate treatment.

I also believe that having a laparoscopy by a HIGHLY SKILLED surgeon EXPERIENCED IN RECOGNIZING, REMOVING, AND TREATING ENDOMETRIOSIS is imperative!

Delayed diagnosis of endometriosis may well lead to infertility… from what I have heard, read, and seen in my local support group members.

Too many doctors are performing laparoscopies without having the training and/or experience to properly treat endometriosis.

This often results in extra surgeries for women who later switch to a more experienced surgeon down the line. Each surgery can increase the risks of scar tissue and adhesions and these can themselves cause pain and other problems.

I firmly believe that to minimize the sheer number of laparoscopic surgeries, women need to research and find highly qualified surgeons to perform their laparoscopies.

There are some really great doctors out there who are passionate about treating endometriosis! The trick, often, is finding them!

I believe that medical schools should be placing more emphasis on properly training physicians of recognizing endometriosis, in all of its shapes and colors, and removing endometrial implants effectively.

Unfortunately, there is much room for improvement in the medical community for treating endometriosis patients.

Based on my own personal experience and the experiences of dozens of endometriosis support group members I have met and talked with, there are far too many medical professionals who are simply uneducated about endometriosis. Hurtful comments are often made to endometriosis patients by the very medical professionals who are supposed to be helping them manage their symptoms!

I've heard some pretty shocking stories from women in my local endometriosis support group. There is definitely room for improvement in the training of gynecologists regarding endometriosis. It is also my personal belief that pediatricians should also be trained in screening for endometriosis patients.

Most of my support group members presented with endometriosis symptoms at a young age and spent years being dismissed by doctors, were accused of exaggerating or seeking attention, etc.

In my opinion, speaking out (verbally at in-person meetings; in writing via poetry, blogs & other methods; by talking with their medical professionals openly)... women CAN get better care if they assert themselves and advocate for their rights!

I used to be a shy, quiet little mouse. Endometriosis has made me more outgoing and has made me passionate about helping fellow endometriosis patients.

Over 26 years of having endometriosis myself, I have come to firmly believe that speaking out about endometriosis really matters!

Endometriosis should not be kept in the dark. Progress in the endometriosis field will not occur without awareness and research.

If you see the following post I wrote, Tuesday, July 15, 2008Endo News Flash!! An ENDOMETRIOSIS RESEARCH ORGANIZATION called CureTogether Launches On JULY 15, 2008!!!, you'll see how excited and thrilled I am that CureTogether has chosen to target endometriosis in their research.

For more information about CureTogether, see their website at:

http://www.curetogether.com/

It's so exciting to have a medical organization taking endometriosis seriously and researching it! Endometriosis had been typically underfunded in comparison to other illnesses.

Well, Elisabeth, you really got me on roll with your insightful comments!

I couldn't agree more about support groups and self-help groups being empowering for the individuals who take advantage of these amazing resources.

Again, anytime you'd like to share your writings... I'd love to see them. I can only imagine after reading your post and knowing the adversity you've overcome that your writings must be very inspiring and uplifting. :) My primary email is: endendo@frontiernet.net.

Thank you for your input and visiting the blog!! You gave some great ideas (like the journaling!) that will benefit many blog readers who haven't tried this method!

Thank you for your kind words!

I really appreciate your input. Have a great day!

Jeanne

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