Background and Demographics

OK folks, one more preliminary blog and then I'll get into the results that you are really interested in. It feels important to provide a bit of context so that you have some sense of who I am (and am not), and the demographic answers to the survey so you know who responded to the survey.

I'm not a scientist, a researcher or a sociologist. I'm just a patient.

I'm sure I could have constructed a better survey, and I'm sure my methodology can (and will) be picked apart. That's fine. Because my secondary goal is to find someone who does have the background to do a real study and pique their interest sufficiently that someone does this again, better, bigger and more methodologically sound. (You know that children's book, "Are you my mother?" I'm like that, only I'm poking into corners and asking, "Are you my sociologist?" looking for that person who wants to help... drop me a message if you might be my sociologist!)


Who I am... 

...from a credentialing standpoint is utterly unimpressive. I really have no right to be doing a study like this from most professional perspectives (and am fairly sure I'll hear about that, too). My academic background is in multicultural gender studies (BA) and creative writing (half an MA). My professional background is as a sustainability educator and consensus facilitator. I teach, write and consult. Here's my website. And here's the other website for the organization I'm the director of. They have nothing to do with medical anything. I grew up in a family of scientists (my dad is an ecologist and my mom a biologist by training) and doctors, so I'm not particularly intimidated by this stuff, but it isn't really my thing, either. I'm also a minister, and seeing a need in the community I am part of tends to inspire a desire to do something about it. And I'm a writer--I've published one book and regularly write for Communities magazine.

Doing this was a subversive, guerrilla kind of act, not following the standard rules for such things, and--perhaps--a little in your face to the established order of things.

The most relevant thing is that I work with consensus, and have a trained mind in understanding underlying patterns, finding what is bigger than contradictions, asking questions (especially when I disagree with people) with genuine curiosity, and being bold in looking for win-win solutions, even if they are not obvious.

I did this because it felt like it would serve and I was curious. And after years of waiting for someone to do something like this, patients are deeply frustrated with the lack of real attention being paid to their needs and voices. This community needs to be seen and validated. And I am, after all, a writer: when I get frustrated, I try to write myself out of it. So here we are.

And here you are:

Who the survey participants are (Questions # 47, 48 and 49)

The overwhelming majority of people who responded were women (86.5%) and the rest were men. (No one took me up on the trangendered label. I was a little disappointed.) Most of us live in the US, with the next largest amount of responses from European countries (most commonly, the Netherlands and England) and then third Canada. Then we had a handful of folks from Mexico and India. Within the US, we are spread all over the country. 28.6% of us are between 40 and 49, and then it is a nice neat curve falling off to very low numbers under 20 and over 70 (see below).

450 lyme patients participated in the survey. However, no questions were required, and so the number of responses on any given question varied from 457 (including a handful of people who said they didn't have lyme)  to 320 (on the question about books). If I share with you a subset of responses, I'll tell you how many people were in that subset.


Transparency

I'll do this in each blog (either in the text, if it flows well, or at the end if not) being clear with everyone what my personal answers (and potential biases) are. I'm typical of responders: a 42 year old woman who lives in the US. I currently live in Missouri, along with 4 other responders.

Next up: we'll look at diagnosing lyme, in all its glories and follies.