Saturday, May 15, 2010

Does Misery Really Love Company?

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.


  1. I have never participated in a live chronic illness support group, and I have mixed feelings about whether would if I had the opportunity. With the right group, live support can be empowering and affirmative, but when it is bad it can be very bad. I can see the issue with illness causing a less stable attendance, not to mention having to travel to attend. I do wish my Uni had something along these lines, but even if they did such groups are usually geared toward students- it is expected that staff can find support elsewhere.

    All that said, I don't know how I would get along without my online network. It be able to reach out and communicate with folks with similar experiences, if not the same conditions, has been an enormous help emotionally. <3

  2. Something to be said about surrounding yourself with the people you admire, not "Debbie Downers"

  3. Hi Leslie,

    I love your writing as usual. This same issue has been on my mind lately because I'm so new to the online community that has been a life line to you. I can see why. Almost daily I feel I'm connecting with people who may not have my exact disease, but who "get me" on levels that even I haven't fully explored. I find myself waking up (the time I inevitably feel the worst) and rushing to my computer for new messages. It's opened my world up like I never anticipated.

    My only experience with a live support group was when the Spondylitis Association of America had a convention in New York City. Quite honestly, it scared me off of them because like you said, most people were not my age. The majority of people weren't as lucky as I was to grow up with a drug that slows or even stops the progression of the disease, so their joints were fused together. It was all scary and depressing and it was almost like seeing my worst I left in tears and, until recently when I discovered the beauty of the online community, I have shied away from support groups for myself.

    What I found most helpful during these times was to focus on OTHER people with chronic illness, as my career path is social work ( with chronically ill children and young adults). But I also know now that I need to focus on myself too. Otherwise, what good will I be to anyone else? More and more, I agree with you that there is nothing like the support you get on here. Thank you again for your post :)

    All my best,
    Maya (

  4. Hi Leslie,

    You bring up some great points about support groups, and how we can make them work. We've been trying an online support group with live chat at Molly's Fund Fighting Lupus as a way to connect people who don't have a local group, or would like a change of pace.

    We have a meeting this Thursday at 8 PM Central (6 Pacific), and it would be great to have you come chat. You can create a free profile at

    Hope you can make it!

  5. Thanks for talking about this, Leslie. Your thoughts are right on with both what I've learned in my work and what I've felt personally in living with lupus.

    I responded with a post, since it would be a little long-winded here. ;) You know me! Here's the post:

    Sending my best as always~

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  7. i was actually actively searching for an RA support group when i e-mailed sara from the single gal's guide to RA. we started a small "sick chick club" and it was terrific. we purposely met for happy hour and talked and laughed for quite a while.

    and i recently met maya who posted above. it was so great! i was taking her portrait for my project, but we talked *way* more than we took photos.

    i think the online community is amazing, but when you can meet some of these people in real life, it makes it that much better.