ME vs. MM: Support Groups And Seminars
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:
- Providing support, encouragement, and hope
- Getting people together and providing a sense of community
- Educating people and encouraging exchanges of information
- Providing a cost-effective method of getting people together
- Sharing experiences and asking questions
- Helping patients realize they are not alone in their fight
- Providing help for specific issues being experienced
- Relieving anxieties of family and friends.
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.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Hi Kevin, I enjoyed your perspective on support groups vs. seminars, and I thoroughly agree with you. As new support group leaders here in Staten Island, NY ( I am the caregiver, my husband the patient) I totally realize these groups are not for everyone. My husband, like you, looks well and had a CR and is in remission almost 3 years with no maintenance. This fact is both good and bad. Some look at him as an inspiration, others sad to say have difficulty, since they are struggling. But we take the good with the bad. We started this group because we knew there were others in our island who needed support and thirty people came to our first meeting.
Another point to consider is that many of the patients do not and some cannot physically get to these patient and family seminars, or have the opportunity to do so.
So...there is always two sides of the coin...it's just about who you are, what your needs are and what gives you the most comfort, knowledge and strength to go on. You said that very well! Warm regards, Laura
Hi Kevin, If you were to join a myeloma support group in your area and attend just occasionally, I think that you would find that people there knew you through your writing as a columnist for the Myeloma Beacon!! I have had people come up to me at meetings and talk with me about my writing, and they are very encouraging about that. I don't think there is any expectation about how well you are at these meetings..most people just want to share a bit about their experiences with myeloma.
Like Pat Killingsworth I like to shoot straight from the hip..I moved 120 miles and bought a home so I could be near a support group here in the west..So be fair I won't mention names ( forgive me Pat ) It was a real downer..The people were very uninformed about their type of myeloma and treatment modalities.. It was a large group too, I found it to be more of a coffee klatch..Seminars on the other hand were great I had wonderful conversations with DRs.Kyle Mikheal, Stewart from Mayo and learned a great deal..Even the fearsome Bart Barlogie ( only kidding ) was more than happy to educate me..My last seminar I had the pleasure of sitting next to the myeloma guru Dr. Kyle for the whole day and I didn't bug him on myeloma he was glad to talk about it..That's what I call support at it's best..
The problem with this disease is that it is not one disease - but many with vastly different demographics. It makese no sense and would be infinitely depressing for a 40 year old having a low-risk disease to attend meetings populated by 60+ year old patients plagued with agressive or end-stage disease, as well as general age-related problems. Ignorance in understanding this disease should no be exaccerbated by nonsensical support groups.
And of the likely 50,000 patients in the US alone living with this diease, I am now sadly convinced that this site is severly skewed towards aches, pains, doomsday scenarios, and a pranoid anticipation of the disease getting ugly. Obsessing daily over a low-risk disease with a fifteen year median survival is totaly messed up - and yet when I read this damn site, this is the mindset I am dragged into. Even 71 year old marathoners obsess from month to month. This doesn't help me at all.
To GettingReal, Amen,even my NIH doctors agree with you..
It took me a year to finally attend a support group meeting in my area. I had heard such horror stories from other people diagnosed with other cancers about how depressing groups can be.
I was pleasantly surprised by the group that I joined. It has a very large attendance. There is time for socialization before and after the main program so that people can interact with others who have been living with MM for many years and with those who have just started their journey. Most of the meetings have an educational program with experts in the field of MM (oncologists, nurses, dieticians, pain control doctors, drug company representatives, researchers, and integrative practitioners). 3 meetings a year we break out into a patient group and a caregiver group so that each group has a chance to ask questions of others in the group or to relay experiences that they are dealing with. The group also has a large fundraising 5k walk each year to raise money for the IMF, MMRF and the local chapters of the LLS.
This group has meant a lot to me and to the others who attend on a regular basis. It also has a website, a Facebook page and a monthly newsletter with lots of links to programs that offer financial and other assistance.
I also have attended many educational seminars offered by the IMF and the cancer centers in my city with MM programs. These provide an additional layer of information and an opportunity to communicate with an added group of MM'ers and professionals who aren't involved with the support group. In fact this coming weekend the IMF is having a patient/family conference here in Philadelphia.
For me, the suport group, the conferences, the listservs and the Beacon forum provide me with a variety of information that helps me with my journey with MM. Oops, I can't forget the multiple webinars that I attend although not as often as the other things because they tend to be too general for my needs.
We all have to find what level of involvement we want as we live with MM. Thanks for your column and raising your reasons for how you manage gathering the information that supports you.
Laura,
I applaud you for being willing to start and lead a support group. I hope it proves to be a successful and rewarding experience. And I hope your husband continues to do well for a long time.
Nancy S.,
The one time I did go to the local support group I had two people recognize me from my column at the Myeloma Beacon (which was actually a bit uncomfortable because I tend to prefer some anonymity). A couple others had not heard of the Myeloma Beacon, so it was nice to promote it as another source for information and support. However, from reading your postings, I think you are a much more socially active person than I am and probably fit in better than I seem to.
Ralph, GettingReal,
I am sorry to hear that your experiences were not very good, but also appreciate that you responded with your viewpoints on the topic. I had expected the responses to this column to primarily be in favor of support groups and try to convince me to give them a try. With respect to feeling this site is skewed to patients with a more pessimistic viewpoint, you're probably right. However, I think that's inevitable with this type of site. The people that tend to visit and stick around are those explaining their situation and looking for help. Furthermore, those that are having problems are more likely to speak up then those that aren't.
Nancy,
Sounds like you've had a very positive experience with your support group and that it is well run and organized. I must admit that those running my local support group also seem to do a wonderful job. They have organized it well, provide a lot of educational as well as social opportunities, and publish a newsletter with a lot of useful information. I think this is more my issue then theirs.
Kevin, no apologies needed, it was still a very good article..
Any idea for support groups with patients under 30? Young adult? I'm on 27 with disease for 8 years though minor treatment if any
Sorry I missed you, Kevin. What a great facility; warm and inviting. Like meeting in a friend's living room. And what an awesome group! Harold and Sue do such a wonderful job...