It’s way easy to feel lonely and isolated when you live with a chronic illness. Even if you’re working full time in a job, surrounded by hundreds, you can feel like you’re on your own little island. And it’s especially true if you become disabled and unable to work.
That’s what I love about the internet. It allows us to meet and connect with people who would have been unreachable otherwise. Many of us use forums, discussion groups and blogs like this. Now with social media growing, we’re finding each other in Facebook and Twitter.
That’s how I came to know Maria Pffeiffer, mylifeworks today. She was generous to participate in my virtual book tour and I’ve come to know her on twitter @mlwt_lupus. Maria is one of the many fellow travelers who strive to make sense of this unpredictable world of chronic illness. Toward this goal, she is organizing an event, to build community and create the supports that can help people who struggle .
If you read my blog, you know I focus on career issues. I’m showcasing Maria’s project as an example of a woman who could no longer do the job she held and with willpower and determination is creating something of value. And I think this is a great idea. What follows are Maria’s words:
A CALL FOR VOICES
This event in May (Lupus/Fibro month) will reflect the multi-faceted dimensions of lupus and fibro. The goal is to speak of the illnesses and our lives that carry on in spite of them. There is much more to us than these physical challenges. Newly diagnosed patients need to see and hear that message. us as a means of adjusting. Nothing is as powerful as knowing there is a person close-by who knows what we go through and can offer us a chance to step out of our situations by spending time together within our community.
I hope to hear from you if you live with lupus and fibro (and any of the other related conditions that we often have). I would post opinions, service requests, family and medical provider viewpoints, local favorite hang out reviews, book reivews and announcements, recipes, gardening tips, employment concerns/barriers. I want to highlight what we are all doing besides being ill. I would prefer to bring awareness to these illnesses in May that reflect our strengths as well as our challenges and am hoping that the locals hear others speak out encouraging them to be visible as well. More info is on my blog post “Our Call For Voices” .
Maria Pffeiffer, Coordinator, My Life Works Today.