Hep B Blog

How Was I Infected with Hepatitis B? Making the Journey from Anger to Acceptance

Image courtesy of stockimages at FreeDigitalPhotos.net
Image courtesy of stockimages at FreeDigitalPhotos.net

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.

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.

20 thoughts on “How Was I Infected with Hepatitis B? Making the Journey from Anger to Acceptance”

    1. Hello: There is currently no complete cure for hepatitis B, however experts predict one should be developed in the next few years, so we are very hopeful. Good luck.

  1. Yes. That’s true. What difference does it make. Just be Grateful, still living our Lives.. up till now.. syukuran..
    By any chance, who was patient zero for hep b? Was it an Aussie as the antigen earlier name.. trivia only:-)

    1. Hello: Great question! One theory is that hepatitis B came to North America with humans during the Ice Age when there was a land bridge connecting Asia and Alaska/Canada. First Nations people in Canada and Native Americans in the U.S. have high rates of hepatitis B. Hepatitis B has been found in ancient mummies in Asia. Thank you.

  2. i was diagnosed three years ago, i dont have any liver damage, but i must be on a med everyday for the rest of my life. i used to have a very active social life and and a great sex life i ALWAYS practiced safe sex. never did drugs. three years later i find myself home alone most weekends, while most of my friends are out- since i can’t drink anymore its not much fun being around people who are drinking. any sex partner is immediately turned off, i cant blame them either. the worst part is how depressed and angry i am at myself. all my life i worried about getting hiv, i was so safe or so i thought. the ironic thing is i ended up on an hiv drug anyway. will my kidneys fail from this drug? will my bones get weaker? three yrs later its still constantly on my mind that i have this, it just eats at you …and theres nothing you can do

    1. Hello: I am sorry you are feeling so sad. Please do not let your hepatitis B infection define your life. While you should not drink, you can go to bars and drink non-alcoholic beverages. Also, don’t give up on relationships. All someone needs to do is get vaccinated (if they aren’t already) to be protected against hepatitis B. If a partner is worthwhile, and you take time and build the relationship (see http://hepbblog.org/2016/02/10/romance-in-the-air-take-a-deep-breath-and-disclose/ for more information on disclosing) you will find someone who is not afraid.
      As a leader of the hepatitis B email support list (join at http://hblist.net/) has often written, “One of the issues we face is feeling unworthy of love and thinking we have to forfeit a future with a partner because of HBV. You CAN Date. You CAN marry. You CAN have sex. You CAN have a normal life. It’s not health, income, or outside circumstances that hold us back. It’s our perspective. There are many people who succeed in this world in the presence of severe obstacles. They succeed because they don’t let it limit them. And they don’t feel sorry for themselves – they use what they do have to their advantage.”
      “Remember the big picture and to not get discouraged staring at one locked door when the room is full of other doors and windows. If there is one thing I could leave this list with after 9 years of learning from you all is to ‘KNOW’ HBV is not a punishment or a disability. It can be an opportunity to discover how to love and accept yourself. And to learn what really matters in relationships and life. Perspective is ‘everything’.”
      Good luck.

      1. Im sorry you have hep b, as I do. Its demonic and I do experience pain. My hepatolagist said as it advances this occurs, but we are all different. I also have a rare form “precore” mutation. I am HBsAg positive, never sero – converted. There is no cure. My last biopsy was a 3. God Bless You. Hope you find a great doc, but still no cure out there.

        1. We are all anxiously waiting for a cure, which experts says should be developed in the next few years.

  3. Wow @hbtalk its too inspiring. Was going through the same situation as you Johnn. However with the support and counselling from hblist members and here. I am completely another person again. I am back to my job and only remember about hb when the time comes for my evaluation with my doctor. Its all about perspective

  4. thanks very nice of you to respond. the other thing i didnt mentioned was i’m now just terrified of having sex again. i’m so afraid of getting something worse like hiv or or other sti’s. i think its because i THOUGHT i was so careful sex wise. i honestly cannot think of anything i did wrong to get hep b. so i am at a total loss when i try to figure out what i could do differently safe sex wise. having sex again makes me feel like i’m just really really pushing my luck, theres little education getting kicked twice by the mule..

    1. Hello: You may not have become infected sexually…. depending where you live you may have become infected at birth or through re-used medical equipment. What you can do is practice safe sex, and make sure your partners are vaccinated against hepatitis B. Relationships are important to us, do not isolate yourself. As the leader of the hepatitis B email support list has written, “… HBV is not a punishment or a disability. It can be an opportunity to discover how to love and accept yourself. And to learn what really matters in relationships and life.
      Good luck.

  5. I heard One of the reasons for hep b is having multi partners…means if we have sex with hep b negative partners then is the any chance to get hep b.i am had sex with multiple people and all of them are negative for this hep b.still is there any chance that iam going to get.??

    1. Hello: The best way to protect ourselves from hepatitis B is to get vaccinated and practice safe sex (use a condom). Also, because hepatitis B usually causes no symptoms, it’s hard to tell who has or doesn’t have hepatitis B. An estimated 65% of people with hepatitis B don’t know they have it. Please get tested, and get vaccinated! Good luck.

  6. Would it be wrong if you kissed someone and you didn’t tell them you had hepatitis B? I want to tell them but I have to protect my privacy. We live in a small world. Unfortunately, I made the mistake telling my college friends what I had. Eventually, word got around and I felt shunned. Now I don’t trust anybody.

    1. Hello: Many people do not tell casual friends about their infection, and share the information only on a “need to know” basis.
      Saliva contains no hepatitis B virus, so you are not required to tell someone you kiss that you have hepatitis B. However, if and when a relationship becomes more intimate, it is important to share information about your infection before you become sexually active, even if you plan to practice safe sex. This creates trust in your new relationship. For information about how to disclose, read: http://hepbblog.org/2016/02/10/romance-in-the-air-take-a-deep-breath-and-disclose/
      Good luck.

  7. Hi… Iam 28 years old female unmarried. I was recently diagnosed with chronic hepatitis B infection on routine test.my parents are also positive for HBSAg. My blood reports are HBSAg – positive, HBeAg – Negative, HBV DNA – 2408, ultrasound of liver is normal, liver function tests are normal. I visited doctor. He told me to wait for 3 to 6 months ago for another report of viral load. What is my likely stage of infection?should I go for medication without waiting or wait and watch?

    1. Hello: Medical guidelines recommend treatment only if you have a high viral load and signs of liver damage, which would be revealed by your ultrasound and liver function tests. Your viral load is low, your liver is healthy, so there really is no reason to beging treatment at this time. Keep getting monitored every three to six months as recommended. Also, I hope your parents are getting monitored regularly. The risk of liver damage from hepatitis B increases the longer you have it, so older adults need to be monitored regularly. Keep eating healthy foods and of course avoid alcohol and cigarettes. Good luck!

  8. Hi, I’m 22 years old thank you very much, your responses are really giving me hope in the future, I was diagnosed with the Hep B back in 2014 my ALT and AST was very high my doctor told me that I have to take medication which may last 5 years or for life since then I’m still taking and they’re monitoring me, I used to go for a check up every 3 months since 2014 to 2015 but this year she told me to come back after 6 months the meds is working for me they also told me I have a cyst in the liver I had a CT scan last months but the doctors said I don’t need any meds for the cyst and should not worry about it at all my question is what does Hepatitis B (070.30) mean is that scary ? I always feel lonely and depressed because of my Hep B I’m taking Viread tenofovir it’s great Medication but weird because it’s also HIV meds I have never had sex I don’t know how I get it if I stay a month without worrying about Hepatitis B next moth I’ll start worrying about it I’ll sometimes cry a lot again I’m glad that I found this website.

    1. Hello: I’m sorry you feel depressed and sad sometimes. It is not unusual to feel this way when you have a medical condition. But please believe, youu CAN Date. You CAN marry. You CAN have sex. You CAN have a normal life. It’s not health, income, or outside circumstances that hold us back. It’s our perspective. There are many people who succeed in this world in the presence of severe obstacles. They succeed because they don’t let it limit them. And they don’t feel sorry for themselves – they use what they do have to their advantage. You are receiving good medical care and treatment. Please know hepatitis B is not a punishment or a disability. It can be an opportunity to discover how to love and accept yourself. And to learn what really matters in relationships and life. Good luck.

      Perspective is ‘everything’.

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