By Christine Kukka
“How did I get infected? Who could have infected me?” These questions are common when we are first diagnosed with hepatitis B.
Dumbfounded by the news, we struggle to understand when this infection could have occurred and who could have infected us with a virus that now threatens our health and well-being.
This diagnosis not only affects our health, it can weaken the trust we’ve placed in family members, friends and lovers. It threatens to dismantle basic beliefs we’ve held about fairness and honesty, and the assumption that if we treated people well that we would be treated fairly in return. Infections know no moral codes and ignore all the unspoken deals we have made with the universe.
Many of us will never know how we were infected or who infected us. First, hepatitis B rarely causes any symptoms so it’s impossible to tell when we became infected. Second, about 65 percent of people infected with hepatitis B in the U.S. don’t know they’re infected. It’s difficult to blame someone who doesn’t know they carry this virus.
While universal hepatitis B immunization has dramatically reduced infection rates since the 1980s, there are still many who did not have access to this immunization. And, a hepatitis B vaccine administered during childhood would have done nothing for people who were infected at birth.
Hepatitis B can be transmitted easily during sex or intimate contact, so even if we practice safe sex scrupulously, if we were not vaccinated we remain at risk. And, often it’s easier to blame someone else rather than own up to our own behavior. But blame holds us back. What we need is forgiveness, instead of acrimony and anger. But acceptance takes time and work.
Nearly 30 years ago, writer Randy Schilts tried to find the first person (Patient Zero), who introduced AIDS to North America in his book And the Band Played On. In the book, Schilts suggested that a sexually-active, gay male Canadian flight attendant, who traveled frequently between Africa and North America, was the first conduit of HIV. This man was vilified and offered up as a scapegoat as someone who intentionally infected dozens.
Decades after the book was published, and after Schilts himself died of AIDS, researchers established that HIV probably arrived in the U.S. much earlier than Schilts suggested, traveling from Africa through Haiti and then to North America. The scapegoat theory was debunked, but the book illustrates the very human need to blame someone in order to comprehend why something unexpected and frightening like hepatitis B or HIV could happen to us.
Sometimes, we need some “other” to focus on until we are ready to move forward and forgive ourselves and the former lover, the contaminated syringe, or whoever or whatever infected us.
A hepatitis B diagnosis is a powerful catalyst that can lead to fundamental changes in our relationships with families, partners, spouses, and friends when we disclose our infections.
If there is a chance we were infected at birth, we must perform the difficult task of telling our families and encouraging our parents and siblings to be tested. The information is difficult to share, but with courage the difficult disclosures and hepatitis B screenings and vaccinations can take place.
Over time, the shock, guilt and fear will dissipate and relationships will be rebuilt and even strengthened. You may find that what ultimately matters most is not who infected you, but the lives you have saved through your disclosure and advocacy.