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Telling Our Hepatitis C Story

[captionpix imgsrc=”http://lucindaporterrn.com/wp-content/uploads/2013/01/story.jpg” captiontext=”Image courtesy of adamr/ FreeDigitalPhotos.net”]I don’t know if any of my blog audience reads the HCV Advocate, a newsletter that I have been contributing to for fifteen years. Here is an excerpt from the January 2012 HCV Advocate.

When I tell my story about having chronic hepatitis C virus (HCV) infection, it usually begins with the moment I got the virus. Recently I realized that this is not the real beginning. My story starts at the point I decided to make a difference. This was when I volunteered at a needle-exchange site because I wanted to help stop the spread of HCV and HIV. That experience opened my eyes, but more importantly, it connected me to like-minded people. This small act led me to Alan Franciscus, Executive Director of the Hepatitis C Support Project and Editor-in-Chief of this newsletter. My association with him changed my life in so many ways, all of them good.

This work brings me into contact with people from all over the world, many whom have told me their stories. Their accounts of trials and tribulations crack my heart wide open, inspiring me to do more. I wish I could scoop up these stories and share them with you. Some are so amazing, especially ones about people who go through HCV treatment and lose spouses or have another serious health or family problems. When I hear these, I think that if they can get through HCV treatment, anyone can!

In my story, I have lived with this virus since 1988. I am a nurse because of having HCV. This virus pulled me towards others who have it, eventually taking me to work with liver disease patients at Stanford University Medical Center. I went though treatment twice, one of which was 48 weeks of peginterferon and ribavirin, working the entire time at Stanford. I responded to treatment but relapsed. I plan to do treatment again, perhaps this year.

Someone who understands the value of our stories is Nirah Johnson, LMSW. She collects stories through her work as a Community Project Specialist in the NYC Department of Health & Mental Hygiene, where she organizes four community Hepatitis C Task Forces in areas of NYC most affected by Hepatitis C. “I heard many life stories that were truly mind blowing, that should be a full length movie, and I wished everyone could hear, be inspired and learn from these stories.” However, Nirah noticed that HCV patients were reluctant to share their stories, much less speak publicly about them. This is likely because an HCV diagnosis comes attached with complications, not just physical ones, but emotional, spiritual, and social issues. The effects of HCV include confusion, social marginalization, and fear of stigmatization.

Nirah wanted to help people develop their stories in a safe space, and thus the NYC Hepatitis B & C Personal Stories Workshop was born in November 2010. “The workshop helps members become clear and comfortable with their own stories, and then prepares the stories to travel out to the world as teachers,” said Nirah. In short, by giving a voice to the pain, the stories have the potential to teach and to heal.

In my story, HCV is a gift rather than a burden (although it is a gift I will gladly give up the next time I undergo treatment). Sharing my body with this virus reminds me to take better care of myself. Without it, I might have waited until I had one of those life-threatening “wake-up” calls that shake many of us out of complacency, a call that sometimes comes too late. Having HCV is like having a small voice in my head—it reminds me to exercise, eat a healthy diet, and to abstain from alcohol.

The gifts from HCV are not limited to my health. I have an incredibly rich life because of the people I meet. I am surrounded by compassionate and generous people who give and give and give. My world is so different from the world portrayed by the news media. I navigate a planet where people help others. My tribe knows that HCV is an equal opportunity destroyer and doesn’t care how someone acquired this virus. I hang out with people who are willing to love the people that others cross the street to avoid.

My HCV story led me to people like Alan Francisus and Nirah Johnson. It led me to my mentor and friend, Emmet B. Keeffe, MD, as well as to many others. Collectively, our narratives connect us, so that we are bound not by a virus, but by our stories about it.

Speaking up about having HCV is a brave and radical act. It takes courage to declare that you have an illness, particularly a potentially transmissible one. Telling your story is like extending a hand in the dark to console another. It reminds us that we aren’t alone, which may be especially comforting to those who are newly-diagnosed or struggling with HCV. In the words of Holocaust survivor, Elie Wiesel, “Whoever survives a test, whatever it may be, must tell the story. That is his duty.”

Links to More Information

HCV Advocate Personal stories can be read as well as written for inclusion.

Smith Magazine’s Six-word Memoir  Can you tell a story in 25 words or fewer? Inspired by Ernest Hemingway’s six-word novel, “For sale: baby shoes, never worn.”

StoryCorps Since 2003, over 50,000 people have shared life stories with family and friends through StoryCorps. Each conversation is recorded on a free CD to share, and is preserved at the Library of Congress.

The Moth This nonprofit organization is dedicated to the art and craft of storytelling. Listen to stories on The Moth Radio Hour.

Viral Hepatitis Action Coalition Faces of Hepatitis  Watch and submit stories.

World Hepatitis Alliance’s Wall of Stories“This is hepatitis”…Real Lives Real Stories Share your story through this website.

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