My good friend, and fellow blogging buddy, Leslie, who authors Getting Closer To Myself recently posted about a topic that is at the core of my work here in our Pacific Northwest lupus and chronic illness communities. It is the topic on the love-hate relationship with participation in a support group when living with illness. I’ve written about this before both here and in articles for other publications and newsletters. It is an important topic and well worth adressing again.
Her post reflects many common thoughts and threads about support groups, be them online or in-person, and I’m glad to see she’s putting her thoughts about this issue out there. With the increasing availability of online support resources, I’ve been tracking to see trends in how in-person support groups will fare. Although we would assume that everyone is online these days, you will be surprised to know that we actually use the computer less than other countries and I regularly hear from people when I’m in the community that they don’t use the computer for much of anything other than online banking. As more people catch up with the idea of using Facebook, Twitter or other online social networking sites, I am watching many of the health veterans that I have followed for the last few years dropping off the radar. There is a changing of the guard, so to speak, with new writers and new voices being added to the conversation of chronic illness advocacy and support…just as it should be. One voice can’t cover it all.
That’s where I think Leslie’s post brings the idea of support groups as an option to help cope with illness mirrors this change in what we’re seeking in support.
I did a local research study some years ago for a health foundation here in Oregon to learn a little about lupus support group participation. What was important about my study is that I also interviewed people who chose not to attend groups, which usually isn’t the case in support group research. One result from my study showed women who chose not to attend lupus groups had positive views of groups, but didn’t think they needed them, because they had enough family support.
What I discovered, though, is that they worked very hard to not burden their families and sought their emotional support needs from their doctors.
Anyone here have a 10-20 minute appointment with their doc to sufficiently address their emotional needs? My guess, and from what I hear from many people here and all over the country, is no.
What I found, and what I’ve experienced personally in attending groups and living with lupus myself, is that support is a term we all need to define for ourselves. We also need to recognize that our needs aren’t fixed, but change and adapt.
I would have to say that the key is in determining what works for you and to make sure that, whatever your support need is at a particular moment, you match it with the right type of source to make it effective.
The wonderful thing about support theses days are the amazing number of options that are available, that weren’t available even a few years ago. If you don’t want to attend the groups in person, then don’t but be sure to ask yourself what it is you do need. If you aren’t making a connection with the group you are attending, then seek another to try out. Personalities, facilitator skills, content and convenience are all factors to consider when opening up your life to others. If you can’t find a specific group in your area, say a lupus group, then consider attending another group that is similar. For example, I frequently recommend the local Scleroderma support group to people living with lupus here in the Portland area as a wonderful option, even if it isn’t specifically for lupus. That’s one reason I work closely with them as a resource partner, because they have their groups open to anyone and the health challenges between people living with scleroderma and those with lupus have more in common than are different. If you’re in the Portland area and want a supportive environment with an amazing bunch of people and terrific speakers/activities, stop by and meet them .
Online support is great for those who need the convenience or anonymity to reach out to others in time of need. The more variety we have in our support sources, the more likely we will be able to match our needs with something that works and get us back on our feet much sooner. There is no right or wrong support resource—only the right or wrong match.
I would love to hear from you on the types of support sources that you use or what types of support you’re looking for and can’t find, especially if you live here in Oregon or SW Washington. My goal is to fill some gaps among services already out there. Your voice will help some of those options become available.
Thanks, Leslie, for contributing to this important conversation~
