#justB: Real People Sharing Their Stories of Hepatitis B
Amy Hill
Editor’s Note: Last year, StoryCenter began a partnership with the Hepatitis B Foundation to support people living with and affected by hepatitis B in telling stories and taking the lead on speaking out about the importance of testing, care, and research. Below we share excerpts from interviews with the first round of storytellers, as we gear up for another digital storytelling workshop. If you or someone you know is interested in telling a story, apply now online to attend our January 2018 workshop.
Kim's Story: “Just Be Courageous”
StoryCenter: Members of many Vietnamese communities living in the United States face significant economic, cultural, and linguistic barriers to adequate health care. What, if any, role did these factors play in your father’s delay in seeking services?
Kim: In my father's case, the cultural and economic barriers were the most significant factors. I had gone with my father to his doctor's appointment and found out that he was recommended for a liver biopsy years ago, but had chosen to ignore it. I immediately made an appointment, and that was when my father was diagnosed with a large mass in his liver. Why didn't he get tested sooner? I'm sure he was worried about the financial impact this may have on our family. It may also be that he didn't know it could become so serious.
StoryCenter: In your story, you mention misconceptions held by members of Vietnamese communities about hepatitis B. How can these beliefs best be challenged?
Kim: These misconceptions are often held by the older generation (65+). This generation is more likely to trust information from well-respected people from the community, such as doctors who speak their language. Also, word of mouth seems to be more influential than reading materials.
StoryCenter: Your story is also available in Vietnamese, with English subtitles. How important do you think it is for #justB, moving forward, to develop stories in multiple languages?
Kim: I think it’s very important to have these kinds of stories in multiple languages. People need to understand how hepatitis B can be such a silent killer, and how devastating it is to lose a loved one to something that can be treated if diagnosed early enough.
Jason's Story: “Just Be Aware”
StoryCenter: Why did you decide to tell the story you told in your digital story?
Jason: It seems like forever, everything has been about hepatitis C. When I open the emails flooding my inbox, there I see it: HIV and hep C. But I have hepatitis B, and as a member of this society, I feel I must do my part to make sure the light is shining on hep B, not just for myself, but for the millions of people—men, women, and children—who did not get to wake up today and tell their story. So instead, I'll do my part and tell mine, and hopefully when tomorrow comes, after hearing my story, somebody will be motivated to talk to someone, get tested, and just simply open their mouths and say, “Let's talk about hepatitis B.” The power of telling my story in a digital format means it will reach more people than I could in one setting. Now that’s impact! I told the story that is my truth. My past represents something that somebody can identify with, so the only way to tell it was to tell the truth.
StoryCenter: What was the workshop like for you? Tell a quick story about the best part, and the hardest part, of the process.
Jason: The workshop was a life changing experience—one I will never forget. The hardest part was that the facilitators immediately got us talking about our stories—and I think that was key to a successful storytelling workshop. The atmosphere was so peaceful and comforting that I could talk about the real issues concerning my hepatitis B, like the drug addiction. That's probably something that would have otherwise taken me some time to do, especially around people I didn't know. We sat around a table, shared our stories, comforted each other, and got it out in the open. We talked about our own naked truth—stuff that some people in society couldn't care less about, until it happens to them. The best part is, I met people like me who have hepatitis B or knew someone who had it.
StoryCenter: How do you see these powerful stories becoming part of the Hepatitis B Foundation's ongoing work on prevention, education, and advocacy?
Jason: We’re going somewhere today, riding on the vehicle of digital technology. People around the world will be amazed at our stories, because somebody is finally doing something about hepatitis B. They will be like, "Wait. Is somebody openly talking about living with hepatitis B?” Other people will be inspired to come forward and share their stories, and politicians will be moved to pass legislation funding hepatitis B research, not just in the United States, but in Asia, the Pacific Islands, and Africa—places where hepatitis B looms in the darkness.
Maureen's Story: “Just Be Brave”
StoryCenter: At the digital storytelling workshop, you shared a bit about your struggle in China to understand the implications of your soon-to-be adopted daughter's hepatitis B status. What advice would you give to other parents whose children have recently tested positive for the virus?
Maureen: My advice to parents whose children have recently been diagnosed with hepatitis B would be to feel all the feelings. Expect many feelings, including sorrow, guilt, fear, and even anger, and accept that these feelings will continue to pop up randomly through life. For example, even today, I feel angry when I read about people who are anti-immunization. Recognize that these feelings, though uncomfortable, will ultimately fuel you to become your child's best advocate.
On the other hand, don't get complacent! Since chronic hepatitis B has no obvious symptoms for young children, don't be lulled into denial. You need to be organized about regular visits to the gastroenterologist for liver checks, ensuring a super healthy diet for your children, and continually educating yourself and your family about hep B.
Be sure to locate the best pediatric gastroenterologist you can. Online forums can be very helpful for this. It is so important to have confidence that your pediatric gastroenterologist is on top of the research and treatment options, and that she is able to handle the issues unique to children with hep B, like growth, physical and emotional development, and age-related social issues.
Also—learn. At the beginning, you may feel overwhelmed by sometimes conflicting information, often in bewildering medical language. But persist, and gradually educate yourself and your family about life with hepatitis B. Your child's specialist will be an excellent resource. Write down questions as they occur to you, and bring them with you to the doctor visits.
Teach. Give your kids developmentally appropriate information about their condition. For example, when my daughters were pre-schoolers, I told them they had a virus in their blood, and needed to be very careful to eat healthy, call a grownup if they had blood spills, not share toothbrushes on sleepovers, etc. As they got older, I shared more information and taught them to clean their own blood spills. I gave them "scripts" they could use to explain their conditions to adults or friends. I told them about the protections for people living with diseases like hepatitis B that are provided by the American Disabilities Act (ADA). I'm now gingerly starting conversations about safe sex. Recognize you may have to educate some people outside your family, too—basketball coaches who don't have gloves in their first aid kits, for example.
Advocate. The best way to do this, I believe (although I have to say many people I respect disagree with me about this), is to be totally open about your child's condition, and teach them to be, too. Hepatitis B is nothing to be ashamed of. Discrimination is illegal. It's simply not that big a deal for anyone except the patient.
StoryCenter: What specific tests, in terms of screening, did you take as a family after learning that Libby has hepatitis B? What was this like for your family?
Maureen: Once I came home from China with Libby, I started the three-part immunization process. Pierre had already started, as soon as I notified him about Libby's condition. Our other children, Julian and Kit, had their blood titers tested to make sure their vaccines were still effective, which they were. Everyone was fine with this.
StoryCenter: The open-endedness of your story is so great. It's told so honestly, from a point of being "in the middle" of an unfolding narrative. How do you think it, and the other #justB stories can be useful in prompting discussions about hepatitis B?
Maureen: I think hearing personal stories can be a good way to reduce stigma. In our case, it is a positive outlook. My daughters are receiving excellent care, and their prognosis for a long and healthy life is good. I also think the stories can give useful information. For example, I think adoptive parents should be aware that negative test results from the child's country of origin aren't always reliable, and that the test should be repeated once the child is home. I also think adoptive parents should get the HBV vaccine before traveling. I didn't, and I wished I had.