Hey longtime readers, remember my little "
Magazine Monday" series? Well, it's back, at least this once. In a recent issue of Health Magazine, there was an article about actress Jamie-Lynn Sigler, mostly about her having MS. I'm pretty clued into pop culture, but I had no idea who Sigler was before hearing about her having MS earlier this year. (I never watched The Sopranos, which I think is what she's mostly known for.) I'm somewhat cynical about how much "awareness" really matters or makes a difference (even though I mostly believe it does, and certainly wish I had been more aware of it before I was diagnosed) but every time a celebrity comes out about their diagnosis, I'm somewhat pleased that the disease is peeking into the national conversation at least for a few minutes.
Most of this article was ultimately a positive thing for MS awareness, I think. But one statement Sigler makes kind of alarms me:
There are so many options now - infusions, pills - that really help with the progression of the disease. When I finish this movie, I want to start a blog or YouTube channel where I can be a guinea pig. If I try things and they don't work or they help, I'd love to be able to share that information with people.
On the one hand, a celebrity with MS taking to the web to talk specifically about MS would be a great thing. We'd welcome her to the blogosphere or YouTube. But the idea of being a "guinea pig" and trying various treatments to "help" us is very troubling to me. I'm trying to give her the benefit of the doubt and just chalk it up to being a poor choice of words. If she is going to take to a blog or YouTube to talk about her specific experiences with MS and with trying different drugs (under the guidance of a doctor) and without trying to offer medical advice, that's great. But the way she puts it here doesn't sound like a good idea, for her or the people she thinks she'll be helping. After all, with MS especially, what works for one person with the disease very well might not help at all for another person. I do like reading about people's experiences with MS drugs, but I don't count one person's experience as the ultimate truth, nor should anyone else. And we already have "guinea pigs" in the form of carefully controlled clinical trials. So go ahead and blog or vlog, Jamie-Lynn, but please please please don't be a "guinea pig" and don't think that we're looking for a celebrity to be our MS guru. We'll take you as a role model and beacon of hope and advocate, but not as a source of sound medical advice.
