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 the illness) 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 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, 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.
Sometimes I get asked “Why No Poster Girl and not No Poster Woman?” And I say, if Ani is okay referring to herself as a girl, and indigo girls are okay with referring to themselves as girls, I’m perfectly happy to call myself a girl sometimes too.
Jocelyn your prose is enlightening.
The parallels, the links, the humor–especially the latter.
I’m glad you’re able to maintain this blog.
Please keep us informed. We are all rooting you on.
Thanks, Dave. You’re a good egg.
Hear you Jocelyn, and I see you. One of the most painful aspects of this illness for me has been the invisibility and loneliness that have come with it. Alongside the mis-judgements people have made. Thank you for sharing your story. xxx
Understood. Thanks for the ol internet, eh? I know it’s a life-saver for me.
First time I’ve been here. I am so impressed and touched by you and your writing. I’m writing this after a particularly bad day with my RA – pulled out Full Catastrophe Living by Jon Kabat-Zinn. But your blog is better and I just want you to know. Hang in — and keep saying the truth.
Welcome, Jill! Sorry to hear of your bad day. I hope the ones to come will be better. I looked up the book and it sounds interesting. What particularly struck me was the “being rather than doing” emphasis. That has much in common with Meisner Technique, which I studied as a drama student at NYU many years ago. Briefly, the technique involves a number of exercises that aim to push you into being present in “the moment” of the scene, rather than focusing on outside motivations as sometimes is the case in method acting. I hadn’t thought about the connection between MT and Chimp and my current approach…but I will definitely think more about it. By the way, Chimp has RA too – he has ankylosing spondylitis, and has since he was 13 or so. So I have some idea of what a bad RA day is like.
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This is brilliant and I admire the efficiency of your writing. We are both Freshly Pressed right now, so I saw your Secret Identity post there and loved it (I think we’re both facing the same reunion, and I’m a theatre geek myself!). I think you’re a fantastic writer. Cheers!
Congrats on your Freshly Pressed, tmq! And thank you ever so much for the kind sentiments.
God Bless you Jocelyn!
Many thanks and the same to you, BWS!
I am in awe. You are a wonderful advocate and an excellent storyteller.
That’s so kind of you to say, Melanie. Thank you.
I can completely relate. I hate feeling like so many people I interact with are forming their views about this illness through what they see in me. But at the same time, I feel a sense of obligation in some ways to represent the severely affected well. …Because so many people I interact with are forming their views about this illness through what they see in me.
Chimp and I have had that conversation a few times – my doctor is an instructor at the local hospital, so he often has a med student in with him when we’re there. I always feel like I have to do a little something to give them a picture of what severe ME/CFS looks like, because they’re not likely to learn anything useful about it in their studies alone.
Hi, I just came across your website and you are truly inspiring! From being healthy to bed ridden and to still bring light and humor everyday is a remarkable thing, and I am so glad that I came across your website. You have inspired me to be thankful for what I energy I do have, and stay within in my “energy envelope.”
Now I am ready to do my breakfast, once having my
breakfast coming again to read further news.