Finding My Voice — To Sing Despite Chronic Illness & Pain

This may seem like a non sequitur, but I think people who can sing are really cool. My best friend is a singer, and when she cuts loose the sound is so beautiful it sometimes brings tears to my eyes-not just because she hits the right notes, but because she seems so natural, so comfortable, so confident.

When I think of the people who inspire me most, most are singers: Björk, Natalie Maines, Madonna, India Irie, Lady Gaga, Natasha Bedingfield… I could go on and on. It’s not just the gorgeousness of their voices or their awesome vocal technique; often, it’s about their message, and how I feel it through the music. They’re so, well, free. And powerful!

So I decided to take a singing class. I talked about it for a while, and I procrastinated because I’m nervous about performing in front of people. I kept singing in the shower, listening with a way-too-critical ear. Then one night, two people I’m quite close to surrounded me, shoved a class schedule from a local school in my hand, and basically forced me to sign up. That’s my story, anyway.

The first class was the other night, and I was really nervous. Turns out, some other students were WAY more nervous than I. Watching each person perform a few notes was fascinating; some people were clearly freaked out and giggled nervously, but others sang with confidence and ease. One woman sang when she wasn’t supposed to, and her voice was beautiful; she got embarrassed about missing her cue, but I thought she was fantastic.

Which brings me (in a roundabout way, I know) to you, Babes. We sick folk often lose our voices. We get shy, afraid to sing out in a crowd and let our opinion be heard. We get embarrassed, feeling like people hear us complain all the time…so why should we keep making noise? We feel something deep within but we get bogged down in how we think other people view us, and we’re afraid to speak up. We’re afraid to sing.

But just like that woman in class the other night-the one who sang out of step with the group but sounded marvelous-we have to get over our fear of staying in line with everyone else and learn to just BELT IT OUT! What we have to say is meaningful, valuable and beautiful. And while we may feel rusty at first, I know that with a little practice we can sing a tune that moves others to action.

Maybe you just use your voice on your own behalf, make a plea for help that is finally heard because you articulate your needs (symptoms? frustrations?) clearly and authoritatively. Maybe your voice soars over the crowd, reaching hundreds or thousands through a blog in which you tell your story and show others how to be strong.

Maybe your voice inspires your family and friends to learn more about your illness, or advocate for you or others. Maybe your voice will be so beautiful and strong that you reach another ChronicBabe who feels alone, who needs to be inspired to find her inner strength so she can start to feel better. Maybe you can change her life.

Once you start singing, who knows what could happen? I used to be afraid to speak up and use my voice to advocate for my own needs; the idea of speaking out on behalf of others, in the face of disbelievers or critics, seemed crazy. And look where I wound up, Babes?! On TV, in newspapers and magazines, on the radio and here on the internets, raising a ruckus on behalf of ChronicBabes everywhere. You can do it, too! Even if it’s just for your own sake, sing out. Make your presence known. I can’t wait to hear your voices!

Until then, I’ll keep singing in the shower. And in the classroom. And walking down the sidewalk. And to anyone who will listen.

Jenni Prokopy is founder and ChronicBabe.com, an online resource for young women with chronic illness. An award-winning writer, speaker, and expert on healthy living, she shares her personal experience – and rallies the expertise of hundreds of others – to help women live beyond their illness and be total Babes. Her writing has appeared in numerous publications, and she has worked with dozens of organizations large and small, local and multinational, to create compelling messages that empower people to work better, play harder. . .and be their best.

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Invisible Illness Week Founder Wins Women’s Health Hero

Lisa Copen, founder of Rest Ministries, Inc., the largest Christian organization specifically for those with chronic illness or pain won the Our Bodies Ourselves award for Women’s Health Hero: Audience Choice. On May 11, 2009 Our Bodies Ourselves announced the 2009 Womens’ Health Heroes, honoring the work of women’s health advocates worldwide, marking OBOS’s first annual effort to spotlight the diversity of care, education and activism in communities around the world.

See OBOS’s announcement, as well as the nomination and kind comments for Lisa here:
http://www.ourbodiesourblog.org/womens-health-heroes-2009

“Every day millions of people worldwide do incredible work to improve the health and well-being of women, and we want to bring attention to their efforts,” said Our Bodies Ourselves Executive Director Judy Norsigian. “Many of our heroes accomplish so much with very few resources, particularly on the frontlines of public health, where gaps in the quality of care and healthcare access remain persistent.”

The inaugural group, chosen from close to 100 nominations, represents seven countries: United States (13), Canada (2), Australia, The Netherlands, Nigeria, United Kingdom, Ukraine.

Jenny Prokopy of chronicbabe.com who was a special guest speaker in 2008 and will be participating in 2009 as well was also selected as one of the Womens Health Heroes.

Copen, who began Rest Ministries in 1997 after living four years with rheumatoid arthritis and not finding illness support that was faith-based says, “It’s a great honor to win this award, but more exciting is the opportunity to have the opportunity for Rest Ministries to gain the exposure. We sponsor National Invisible Chronic Illness Awareness Week each September and have a five-day virtual conference online. I hope that this award will be a reminder of the resources that are out there to encourage people while living with illness.”

To find out more about Rest Ministries visit our web site at www.restministries.org and information for National Invisible Chronic Illness Awareness Week is now being updated for 2009 at www.invisibleillnessweek.com

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