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ME vs. MM: Support Groups And Seminars
By: Kevin Jones; Published: August 15, 2013 @ 4:04 pm | Comments Disabled
I have only once gone to a support group meeting. Earlier this year, I attended a meeting at the local Gilda's Club because I thought Beacon columnist Pat Killingsworth was going to be attending as a guest lecturer, and I was looking forward to meeting him. Unfortunately, the calendar on the group's website was in error, and Pat had actually been there a few months before.
Most cancer patients in the United States are probably familiar with Gilda's Club, but for those who aren't, or those who are from other countries, Gilda's Club is a non-profit organization providing emotional, educational, and social support to cancer patients, their families, and friends. The organization is named for Gilda Radner, a comedienne who died of ovarian cancer in 1989, but battled it head-on and with a sense of humor.
The Gilda's Club in my area provides a wonderful, friendly, welcoming environment for cancer patients, but other than that one visit, I have had very little desire to attend the myeloma support group. I have considered going on a few other occasions, but when it comes down to it, I just never seem to make it.
As I mentioned in my previous column, I think part of my reluctance is due to the fact I'm doing very well at the moment, while many of those at the meetings are not. I don't feel like I would fit in well with the group or contribute much to the group. And if I'm completely honest with myself, I don't want to be reminded of what may be in store for me down the road.
Conversely, I have attended several seminars and conferences. I enjoy these and have no problem with attending them.
I recently attended an International Myeloma Foundation regional workshop that included lectures by Dr. Rafat Abonour from the Indiana University School of Medicine and Dr. Andrzej Jakubowiak from the University of Chicago. As one would expect, the presentations were very educational and informative. However, I also had the opportunity to meet several other myeloma patients, including two who were part of the same clinical study that I participated in, under the direction of Dr. Jakubowiak.
Prior to that, I had attended Help on the Hill, a two-day educational program sponsored by the Van Andel Research Institute that discussed the latest research in cancer. The seminar was intended for cancer patients and survivors, family members, and caregivers, as well as healthcare professionals, so it was better suited to the layperson then some of the other more technical conferences.
In addition to the presentations, meals were served both days, which provided the opportunity for my wife and I to meet a variety of different people, some of whom were cancer patients and caregivers, others who were part of the healthcare industry. The seminars really promoted the need for clinical studies, so the fact I was part of a trial was often a topic of interest.
So how do support groups and seminars differ such that I enjoy the latter, but have little interest in the former? To answer that, I thought about some of the benefits associated with each:
As you might have noticed, I (purposely) didn't distinguish whether these items above were associated with support groups or seminars and conferences. That's because for the most part, they both provide generally the same benefits.
I think the big difference for me is that support groups tend to be more socially and personally oriented, while seminars tend to be more educationally and technically oriented. That's probably why I tend to favor the conferences and seminars rather than the support groups, since I tend be more analytic and research oriented and less relational with respect to my disease.
Having said that though, aren't The Myeloma Beacon and other similar websites support groups? Why don't I have the same aversion to these sites that I do to support groups?
In fact, I probably reveal more of myself and my feelings through my columns for The Myeloma Beacon and my postings to my personal website than I do in my relationships with family and friends, with the one possible exception being my wife.
I believe the difference is that we can maintain a certain amount of anonymity on the websites. We can each come and go as we please, lurking in the background, choosing to contribute on our own terms.
In summary, I guess it's to each their own. Some people will thrive in support groups and prefer a more personal experience, while others such as myself are more inclined to keep a lower profile (not counting being a columnist for The Myeloma Beacon).
Peace, and live for a cure.
Kevin Jones is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here [1].
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
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