Monday, March 17, 2014

What Kind of Support Do You Need?


Christine Molloy, authoress of the blog Thoughts and Ramblings on Life, Love, and Health has penned yet another interesting post entitled Support Groups: Not-One-Size-Fits-All.

In it, she discusses her experiences with support groups of varying nature:
....However I was finding that the more time I spent in this support group, the more depressed I was becoming. And while I was struggling with many aspects of having a chronic illness, I was not depressed by any means when I started going to the group. There were multiple factors in this scenario that contributed to this, but the end result was that it wasn't the right environment for me. It did not feel like a nurturing, safe place where I could learn to live better with my illness.
Christine is right, I think. There's support groups. And then there's not-so-supportive groups. My one experience in this area was in a group that sought members that had chronic diseases and was not specific to Sjogren's. My reaction was similar to Christine's in that I came away from the meetings  feeling as though I was not only carrying the weight of my diagnosis, but crushed under the other members' burdens as well. The participants shared their challenges -- at length -- without pausing to take a breath to consider some solutions to their problems. As I was newly diagnosed, the experience seemed to paint a future with chronic disease as bleak, painful, and joyless. After four consecutive meetings after which I drove home in tears, I arrived at the same conclusion as Christine. This group was not providing what I needed most at the time: information, strategies, camaraderie, and above all: reassurance that life would still be meaningful and joyful in spite of my disease.

It's important to point out here that not all support groups are conducted in a similar manner; sjoggies Amy and Heidi enthusiastically participate in the Sjogren's Syndrome Foundation's Dallas, TX group, for example. The San Francisco bay area chapter is active and several members have let me know how much they appreciate this group. I am guessing that there are far more positive-oriented Sjogren's groups out there than not. Christine eventually found the support she was looking for in the Boston area:
My one saving grace in the support group department (besides the one-on-one interactions) is an in-person Sjögren's Syndrome Foundation support group in Boston. I think I have figured out the difference for me. The leader, who is a psychiatrist, keeps the group very structured. There is usually a topic and guest speaker. This keeps the session focused. There is free time to talk to other patients and once a year, one of the meetings is more interactive with various round table discussions but again, it is structured. While there is a bit of commiserating about this symptom or that, overall it is an opportunity to learn about our illness and different ways to manage it. Now for some people, this might not be the best type of support group for them, but for me, it works.
Head over to Ms. Molloy's blog to read the rest of this excellent post.

Check out this listing for Sjogren's Syndrome Foundation support groups in your area.

Share your support group stories. What are you looking for in a meeting? What works for you? What doesn't?

Post edited 2:10 pm 3/17/14

4 comments:

Kate S said...

I had a similarly bad chronic illness support group experience at one point. It was very much a "pity party" and an "ain't it awful". It almost felt as if everyone was competing to show how her situation was worse than anybody else's.

And there was a lot of anger towards health care professionals. Don't get me wrong, there are some crazy ones out there, and I've got my own bad doctor stories. But there was a huge displaced anger, as if doctors were deliberately trying to keep them sick.

More positive support included: individual counseling with a psychologist, who helped me in the initial stages of accepting some of the things that went with my crazy new reality, and a different support group, a few yard into my journey.

This group was great - it was called "Disability doesn't come with a manual", and the very dynamic leader focused on figuring out how to help each person could optimize what they were capable of. It could be anything from what kind of wheel chair to get, to a brace, to a new way of tackling a task at work. It a had period at the beginning to vent, or describe new issues, discussion of some reading, and brainstorming around peoples issues. I only stopped because it met at night, which became difficult for me.

And I use http://sjogrensworld.org, an online support group, which is a very kind and supportive group, ably administered by a group of people who keep things on target and keep the weirdness you can get in an online group to a minimum. I get practical advice there, as well as a chance to just grumble when I need that.

mcspires said...

The nearest support group to me requires an hour travel there and of course another one back. Add that to the time of the meeting, the time to just get ready, and it is just too much. I get my support from a couple blogs, most particularly this one,which I find amazing! Julia provides great information, takes the disease seriously, but not life. She has a great balance! Reading her blog in the morning is always a great start to my day. I don't feel so alone.

Christine Molloy said...

Thank you for posting this, Julia. Just to clarify in the first paragraph, the negative experience I described in that support group was NOT a Sjögren's support group. It was a support group for people with aall sorts of chronic illnesses and disabilities. Only one other person in it had Sjögren's besides me. To be honest, I'm not sure it would have made a difference either way.

I'm sorry you have had some similar experiences with support groups. You articulated it quite well about people not looking at how to find solutions.

Heda said...

I'm with you. I quit my support group. It was making me focus too much on my illness and not enough on my health. I find it heaps better to manage my illness in ways that best suit me and to get on with life.

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