I am No Poster Girl in that:
I didn’t ask to have this illness, and I truly don’t want to be its poster girl. Who wants to be terribly sick and have their most notable characteristic be that they’re the poster child for some horrible disease? I know, however, that being the only person a lot of people know with this disease, and being more severely affected than many people with it (Dr. Cheney told me I have the dubious distinction of being among the half-dozen most affected patients he’s seen in 25 years of treating ME/CFS) makes me representative, by default, in a certain way.
I am not merely a poster girl; being a chronically ill person does not mean I have no other identity. Yes, ME/CFS touches every moment, every corner of my life, but I am still the person I always was, even if I can do almost none of the things I used to in the way I used to. The name is a way of defiantly thumbing my nose at something over which I have very little control.
As Ani sings, I am a poster girl with no poster. What do I mean by that? Being mostly bedridden, I have no poster, i.e., no representation in the outside world. The severity of my “invisible” illness has made me mostly invisible. Furthermore, my illness is little known itself. Most people have little understanding of ME/CFS, if they have heard of it at all. Writing here, when I can, is a way to make a strike against those aspects of my disease.