Hep B Blog

“How Did You Get Hepatitis B?” Why We Should Answer

Image courtesy of Serge Bertasius Photography at FreeDigitalPhotos.net
Image courtesy of Serge Bertasius Photography at FreeDigitalPhotos.net

By Christine Kukka

Telling someone you have hepatitis B is almost always followed by the question, “how did you get it?”

The question can feel like an invasion of privacy or an indictment. Behind the question lurks a desire for reassurance that hepatitis B won’t happen to them, but of course it can. And that’s why we should answer and tell our story.

On a global scale, the story of hepatitis B is the story of humanity. How we and our forebears became infected results from centuries of human migrations, the transatlantic slave trade, political upheaval, poverty, re-used medical devices and ineffective public health policies.

Our stories are the result of those global trends. But do we have to share when telling them makes us feel powerless (my mother had it and there was no vaccine where I was born), or like a victim (health workers re-used syringes on me), or just stupid (I didn’t practice safe sex)?

Because hepatitis B happens to “innocent” people, especially children, people want to find fault and stigmatize the infected. It’s a common response, the more innocent victims of crime or disease are, the more threatened and unsettled they make us feel. They remind us that we live in an arbitrary and cruel world no matter how much we play by the rules. To avoid that reality we “blame the victim” and assume disease could never happen to us or someone we love.

The HIV epidemic and the government’s slow response illustrate the dangers of such denial. But despite widespread prejudice, people with HIV began to tell their stories. They knew education and awareness would prevent new infections and speed the search for a cure. Their stories gave a human face to HIV infection. The infected became what they always were: our neighbors, friends and family members.

An HIV blog recently asked members to share how they became infected. One man wrote, “On the one hand, we all know that it ultimately doesn’t matter how and from whom (we) got the virus…On the other hand, it is comforting to know that many others out there were infected the same way (carelessness or the heat of the moment, whatever…) It’s all about us owning up to the choices we made and living with them in the here and now.

“Why? Because we need to remember all the people reading our posts who are still negative (for HIV),” he continued. “We often question what (exactly) is safe sex? Well, by pinpointing … what infected us, we are defining what is safe and what is not, if not for ourselves then for others who might still be unsure or who might hear conflicting information.”

We who live with hepatitis B can also tell our stories to prevent new infections, to reduce stigma, and to force public health policy changes that will improve prevention and treatment of hepatitis B around the world.

Our stories won’t make the world a less risky place, but the compassion and kindness they invoke can help soften a chaotic and arbitrary world.

To read stories about people living with hepatitis B, visit the Hepatitis B Foundation’s Personal Stories page and the Association of Asian Pacific Community Health Organization’s Just B Campaign website.

Comments on this blog are closed. If you have questions about hepatitis B or this blog post, please email info@hepb.org or call 215-489-4900.