Saturday, November 7, 2009

Autoimmune Support Group

Several months ago, I saw a flier on the wall of my rheumatologist's office offering a women's support group for athletes with chronic illness. Since one of the things I continue to struggle with is how to be active while my body feels so awful, it sounded like a group that could potentially be really helpful for me. I missed the first meeting because of the chaos with the conference, but I am happy to report that I finally met with the group this morning.

The group has turned into a small, informal autoimmune support group. There were four of us who met at a local coffee shop this morning. One woman also has RA, and the other two have different autoimmune issues. All three were older than me and had been dealing with their conditions for at least five or ten years - pretty much since they were my age. But, despite these differences, we all had in common that our illnesses can make it difficult to stay active - or even keep up with others sometimes.

It was really amazing to talk to these women. While I love APL and RK with all my heart, and I never would have made it through the past two years without them, there is just no way for them to completely understand what I've been going through. And though I can email with my cousin who has RA, and I've met a few people online who have RA, I don't think I've ever really had the chance to sit down and talk face to face with someone who really understood me. I mean, these women were complete strangers to me this morning, but, on a certain level, they understood more than anyone I've talked to since I got diagnosed.

One of the women made a really interesting point about autoimmune issues and people who are really high-achievers in their lives. I'm not sure I'm going to be able to communicate it properly here, but it really struck me as true, so I'm going to try. She said, in a way, it makes sense that people who are really driven end up with autoimmune issues. Driven people tend to be really hard on themselves, and, metaphorically, that's exactly what an autoimmune condition is - the body being really hard on itself. I think this makes a lot of sense. I've never really thought about how being an overachiever - in school, in sports, etc - was another way of being hard on my body. I've been hard on my body all my life - it didn't start with the RA. So it makes sense that part of dealing with an autoimmune disease is finding ways to ease up on yourself, give yourself a break, and finding ways to love yourself as you are. I'm hoping this group can give me some advice on how to do that!

I have to admit that it is a little bit scary that these women have been dealing with autoimmune issues for five or ten or twenty years, but still haven't found all the answers. But, somehow, it was also really comforting to know that I am not all alone. I'm not the only one struggling with my messed up body and immune system. It was reassuring to hear that I can get the disease under control and get my life back on track from people who have actually done it themselves - or have at least made more progress than I have! And it was also really good to realize that there are resources for me to find support.

The group is hoping to meet every other week or so to talk about these issues. We also talked about getting together to do some moderately active things - like a bike ride or a hike - where we all know we'll be going at a more moderate pace than the rest of the super-active Boulder people! And that sounds pretty good to me too, since I've been having so much trouble getting started being active lately. I think this group could be a very good thing for me, and I am already looking forward to the next meeting. And I'm glad I responded to a flier I saw on the wall.

1 comment:

Rebecca said...

Darling M--

I'm so glad to hear you found some new people, especially ones who will absolutely understand everything you've been through without a lot of explaining on your part. Good for you! I always think it sounds a little patronizing to say you're proud of someone, but I really am proud of you for making the time (never easy) and putting yourself out there (way hard, as I know) to get involved in this. HUZZAH, lady, huzzah! Of course it made me miss you more, but c'est la vie.