By Kairol Rosenthal
During my stint with cancer, I’ve attended both thyroid cancer and young adult cancer groups. They ranged from excellent to abysmal. Here are six tips I’ve come up with for making the most out of a support group experience. I’m curious if you’ve ever tried them:
1. Contact the leader first to see if it’s a good match for you. Ask if participants have a similar disease type or variation as you, what stage of their disease are they in, if the focus is emotional support or swapping practical medical coping strategies. If age, relationship status, race and ethnicity and other personal factors are important to you, ask about the demographics of the group.
2. Try a few meetings. Sometimes groups vary hugely from meeting to meeting depending on who is there and what issues are coming up. Give it more than one shot.
3. Go out on a limb. If you want to discuss an issue that nobody is talking about, be daring and bring it up yourself. Many support group participants are often waiting for that one person to talk about the elephant in the room.
4. Find your wonder twin. Sometimes a support group is a great place to meet one person who you really connect with. It is perfectly fine for you to ditch the support group and continue to meet for one-on-one support with each other over coffee.
5. Chose a format that’s right for you. Telephone, online support groups, social networking groups, one-on-one peer support through matching organizations. People have even told me that reading Everything Changes was their support group. If one format of support group isn’t right for you, find one that is.
6. Don’t feel guilty or badly if you are not a support group person. The point is to get support if you need it and it doesn’t have to always come from a group. I personally find better support through my friends who do not have cancer than I do through organized support groups of people my own age living with my disease. I’m okay with that.
Have you ever attended a support group? What made it either good or not so hot? Got any ‘support group success tips’ to add to the list?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
September 3rd, 2011 at 9:15 AM
I haven’t attended many support groups in person, but I’ve found the online support groups like Planet Cancer helpful. I think the “wonder twin” thing has helped the most for me; finding someone who was similar in age and type/stage of cancer as myself, as well as struggling with similar high-stress profession in the same city. It’s been wonderful becoming friends with her and being there to support each other. I think it’s probably one of the only good things that have come out of my whole cancer ordeal. And I have you, Kairol, to thank for getting us in touch with each other — so Thank You! ;)
September 4th, 2011 at 10:12 AM
For anyone else looking for that perfect one-on-one match that Kim just described, an excellent resource is http://www.imermanangels.org/ . They are the match making yentas of the cancer world and since they were started by young adult cancer patient Jonny Imerman, they really have a strong focus on young adults. In addition to making matches between survivors, they are also great at making caregiver matches too.
September 4th, 2011 at 3:32 PM
With me, I noticed my support needs changed as I went through the whole process, or maybe it was that I was becoming more comfortable with things the more I became exposed to them, and also it depended on how I was doing medically at the time. So as I changed, the kinds of support I used started to as well. But I guess overall I would say think of the different kinds of support out there, whether it’s books, online stuff, in person vs phone contact, group vs 1-1, and pick what feels most comfortable for you at the time.
With me, for example, when I was first diagnosed, I wanted to be proactive about my mental health, and didn’t want to be completely freaked out all the time, so I found it best to do 1-1 type counseling with oncology social workers both in person at my treatment center and on the phone through Cancer Care. I felt too sick at the time to be going anywhere else, and I also was still undiagnosed at the time, but suffering from an additional medical condition, which made things more difficult and led my experience to be even more “atypical”. So I felt disconnected from other patients, since I had multiple conditions, and at the beginning/during treatment, I didn’t want to meet other people. I also was afraid in the beginning to talk to other patients and see what they were going through. Later, after reading your book, my feelings changed on that, and once I eventually met people, that changed, but at that time, I wasn’t ready or at least didnt think I was ready for others yet, so 1-1 worked best for me to start with.
Right after treatment, I wanted to explore more support resources and found your book was totally like the best “support group” I had come across, other books or forums just weren’t cutting it, and I related to so much in your book, that I started to then re-explore more YA cancer resources. Ha, and I was about to give up before reading your book.. I read some other books, tried some other online forums, and was just like, this is not for me, I’m not finding people I connect with. So my next piece of advice would be try multiple things before giving up, because now I’m so much more involved and I would’ve missed out on great things had I not persevered.
I also found that after reading the book, it helped me transition more to posting online whether on your blog, or planet cancer forums, etc… I learned how to use the forums better, at first I wasn’t sure what I was doing or looking at, I was just too overwhelmed and didn’t even know what I wanted. But as I was trying to recover post-treatment, specific issues were coming up for me, and it was easier for me to focus on something and search for support for that individual thing, than just without any direction. I also found how to locate the YA online group for my specific cancer, which helped.
From there, I transitioned to online and in-person educational workshops, and then to some in person social/support type things. Ha, so I guess it was a graduated support experience. Now I’m trying to encourage local hospitals/non-profits to start local YA support stuff. So it’s funny, I went from not wanting to talk to peers, to now organizing events/support for peers. But I think my own experience helped me learn and hopefully it will always remind me to meet the individual where they’re at. Make them aware of the supports out there, but they might not be ready for certain kinds at certain times, and that’s ok. As long as they know it’s there, and I outright tell them, right now, you might be too overwhelmed, or I didn’t want to talk to anyone either at first, but if you ever do, you know it’s here. Sometimes I think post-treatment is when some of us 1st get a chance to actually process things, and that’s often a time when a lot of the support vanishes. So it’s good to remind people they can access stuff post-treatment as well.
September 4th, 2011 at 8:25 PM
Tara - You make a great argument for needing different kinds of support at different stages of the cancer trek. You also bring up such an important point about the evolution of your relationship to online support. I think it can be really overwhelm to use the internet for cancer support; it can be a Pandora’s box from which TMI, scary stories, and mis-matches leap. But used strategically and with specific support goals in mind, it can yield a lot of fruitful patient-to-patient information and great relationships.
September 22nd, 2011 at 7:10 AM
[...] Visit Everything Changes to read the rest of Rosenthal’s tips. [...]
May 28th, 2014 at 2:17 PM
[...] Visit Everything Changes to read the rest of Rosenthal’s tips. [...]