S here.

For me, the impetus for this blog came from a medical anthropology class I’m auditing from my alma mater.

Second or third class into the semester, we started talking about illness narratives–the stories that sick people tell others about the effects of their illness (more here). The professor emphasized that the narrative has societal and psychological implications; it’s okay for a sick person to sit on the couch all day and ask that others bring him soup. But only as long as the person is sick, and only as long as a person with that illness could expect to be sick (societal or interpersonal expectations are a limiting factor).

So what about people who have diseases that don’t go away? I wondered about it for a long time. When I finally asked the question of the professor, she gave me the “oh, we’ll be getting to that answer” and left it at that… The question remains unanswered, at least in class.

M & I know how illness narratives go–there’s a good, a bad and an ugly side of it. I’ve had friends of friends say rheumatoid arthritis? At 19? She’s faking it. And I’ve had people be completely supportive. But most of the time it’s clear that it’s difficult for my peers to really understand.

In the case of my disease, people have heard of RA, but they only seem to know it in the context of their grandparents. There’s no real understanding of the physical symptoms or how they impact a person’s day or greater life choices (i.e. if I decide to pursue a degree in archaeology, I often wonder if I’ll physically be capable of participating in excavations by the time I’d be through with my Ph.D.).

I’ll always remember the day my boyfriend, N, told me, “I told my mom about your arthritis. She asked how bad it is. I had no idea it was such a big deal.”

N’s a pretty smart guy, so this isn’t a dig at him. But it’s strange to me that such a common illness, one that affects so many of our grandparents would be without a baseline level of shared understanding.

Then again, when I heard the diagnosis, I didn’t believe…

All these reasons are the reasons for this blog. For M and I, we have an outlet what few people around us really get. For others like us, there is understanding, hope, support and discussion.

Welcome. We’re glad you’re here.