I attend(ed) two “in-person” support groups; one on campus through the student health clinic, which I helped start, and one off campus sponsored by the Lupus Alliance. The on-campus group is for students with any type of chronic illness, and the other is specifically for people with lupus.
One thing I’ve noticed is that at the several support groups I attended, while we often talked about serious issues, most of our time was spent laughing. This is sort of surprising to me, or I think, rather, would be surprising to healthy people, who probably think that support groups of this sort are a pity party, full of a bunch of “Debbie Downers”.
There was a time when I felt grateful for these few hours every couple of weeks, where I could be open and candid about illness and other things going on in my life. The student group has ended, and unfortunately, probably won’t continue next year. And lately, you couldn’t pay me to go to the lupus support group. I haven’t been for four or five months.
When my disease activity is low, I have a much easier time of dealing with group than when I’m in active disease mode. You would think that it would give me comfort to be around other people who know what I’m going through during those down times, but instead it just feels overwhelming, adding insult to injury. On the other hand, when I’m feeling good, I don’t really want to go and hear how bad lupus is. Because I know how bad it can be. I’ve been there, and will certainly be there again.
I think another thing that has kept me from getting more attached to the lupus group is that I am usually the youngest one there, and there are several other characteristics in which I strongly differ from the other people that attend. On the surface, these differences aren’t insurmountable, but when it comes right down to it, I feel like I have less in common with many of them than I do with other people I’ve met who have totally different illnesses than me. And that’s what was great about the student support group. Even though we had different illnesses, we were all dealing with the common experience of navigating higher education – which can be unforgiving to us chronically ill folks – while also dealing with the unpredictability of illness.
Generally, I think support groups are really useful, which makes it even more difficult to admit to myself that I am having serious issues about attending, and that as far as the lupus group is concerned; I don’t know if I’ll ever go back. Because right now, for me, my goal is getting healthy and staying that way, and if the support group doesn’t fit into that schema, I’m not going to do it.
I’d like to hear other people’s experiences with support groups. Do you generally find them helpful? Or do you find more help from more informal means?
For me, I have several friends now that I have met through various venues, who are chronically ill. I find our encounters much more helpful and therapeutic than I find traditional support groups lately.
And Truth be told, for the most part, I have been doing better lately (er, well, I say that now as I’m pretty sure I’m in active lupus mode right now…more on that in an upcoming post). But that doesn’t mean that things are easy or that lupus isn’t a part of my life, because it certainly is, everyday. It’s just that it has taken a backseat to other things, like trying to build a wonderful, solid relationship with my boyfriend, working on finishing my second preliminary examination for graduate school and starting my dissertation, working to create a non-profit organization, and working on writing a memoir.
I think this issue with in-person support groups has once again made me so thankful to have the online community of chronic illness bloggers, who have been, and continue to be, extremely helpful and supportive. It’s funny that we live in a time where “live” communication just may not be as good as the virtual world. And in some ways, that’s the nature of the beast. One of the main problems with “live” support groups for chronically ill people is that, inevitably, the group that participates is not consistent, due mainly to illness. And this is a serious impediment to building community and staying connected; which is less so the case virtually.
And I personally don’t think of the online chronic illness blogging/virtual community as a support group, per se, because it’s less formal and organized than a “traditional” support group should be, although it seems to be leaps and bounds more beneficial. In many ways, I think of the online community as so much more. It’s more than support, it’s my life line.