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Disclosure: How to tell your partner, family, or friends about your hepatitis B or D status: Tips and tricks

 

 

 

 

 

 

 

 

 

Written By: Soumen B., Silvana L., Partizan M. 

Sharing a diagnosis should not be, but often it is, a challenge. At some point it is important to tell your partner, family or friends about your hepatitis B/D status. This is an important moment for you and the people with whom you share your daily life. 

Remember: Your comfort is just as important as the person you choose to talk to. You might be nervous, or you may be worried about what they will think and how they will receive the information you are about to share. You should know that not everyone will understand but you can be prepared with as much information as possible to be sure to set yourself up for success in this conversation. Know that most people do not know about hepatitis B, how it is transmitted or the health problems it causes. But for you, it is a step you should take: to live a normal life, to live honestly and to foster love and sincerity with others. For this, you need to prepare spiritually and emotionally. With preparation, this can be a moment of liberation for you. Remember: you have the right to share exactly as much as you are willing to and nothing more.  

Preparing to disclose your hepatitis B and D status 

Give yourself enough time to understand your emotions and to prepare for the emotions of your loved ones. Before disclosure, it might be helpful to think about the following:  

  • Your readiness: make sure you feel emotionally prepared to talk about your health. Disclose when you feel ready to handle a range of possible reactions.  
  • Their readiness: pick a moment when the other person is likely to be calm, receptive and not distracted or stressed.  
  • Level of trust: assess whether the person is trustworthy, empathetic and respectful of your confidentiality.  
  • Learn about your condition: Understand what hepatitis B/D is, how it is transmitted and how it is managed. This helps you feel more confident when talking to others. 
    • Write down the main things you would like to tell your person: what the disease is, how long you have known, what your condition is and what they can do to check their status.  
    • Read what you have written several times – how do you feel while you are talking? 

Think about why you are sharing this: To protect their health? To ask for their support? Is it about transparency or deepening trust

  • Talk to them and explain what you expect out of the conversation. Maybe you want them to know why you no longer drink alcohol at family gatherings or why you may need more rest than normal. Or maybe you want them to offer you their time and support so that you can talk about your fears. 
  • Choose a calm, private moment when you both have time to talk. 
  • Do not do it under pressure or during an argument. 

 

Now imagine that you are in the role of a listener and your loved one tells you that they have hepatitis B, which you know nothing about.  

  • What would you like to ask them, and to know? Putting yourself in the other person’s shoes will help us to imagine their emotions, fears, denial–these are normal human reactions and they will fade away with the time and the right information given. 
  • Anticipate reactions: Some people may be scared at first, especially due to a lack of information. Be patient. 
  • They may ask you questions that you don’t have an (or don’t want to) answer–be honest and leave that part for another time.   

 

Key points for your conversation: 

  • Share what hepatitis B and D are and how they affect your health. This can help your partner/family better understand the situation and reduce any uncertainties. 
  • Helping your person understand that it is a chronic condition that for some people requires taking a pill a day like so many other chronic conditions, such as high blood pressure, can help “normalize” the disease. 
  • Take the time to explain that a chronic illness does not just depend on the medications you might take, but also on food, exercise, rest and your mental health. 
  • Talk about how this is a shared journey, and that your family members’ or partner’s collaboration will be a key to your success navigating this journey. 
  • How hepatitis B and D Can Be Spread: You can reassure others that there is no risk of transmission in everyday interactions like hugging, sharing food, or casual touch. Hepatitis B and D can spread through contact with blood and other bodily fluids during sexual relations and other blood-to-blood contact. 
  • Emphasize that there is a very safe and effective vaccine for hepatitis B, and prevention is possible. 
  • Check with your local health services to see how they can obtain the vaccine. It may be helpful to give them printed or online materials about the disease or show them a video of patients sharing their stories.   
  • You can live well with proper medical care. 

 

For example, you might say: 

“I want to share something important with you because I trust you and I want to be honest. I was recently diagnosed with hepatitis B (and I also tested positive for hepatitis delta). It’s a virus that affects the liver, but I am under medical care and taking care of myself. I didn’t choose this, but I want you to know because it’s part of my life now.” 

You can also watch this storyteller video, where MD shares her experience disclosing her status to her boyfriend. 

If you are afraid of a negative reaction: 

  • You can say it more neutrally: “I have a liver virus that I am keeping under control with the help of doctors.” 
  • You can ask for the help of a health care professional to clarify the situation for them. 

In everyday reality, the reactions of social groups are different. This is related to various factors such as the level of education, relevant medical information, social relationships and so on. Educational and cultural backgrounds have a significant impact on how individuals and social groups understand and respond to hepatitis B and D.  

  1. Educating your partner or family member
  • Proper education can positively influence people’s attitudes. You should provide as much information as possible when disclosing your status to them. With more information, they may be more open to supporting you rather than perpetuating stigma or having discriminatory attitudes. 
  • By giving them enough information, they can share hepatitis B (and D) information with others, contributing to community education about both diseases, and helping to reduce fear and uncertainty. 
  • Explain to them that this does not have to be a one-time conversation. Reassure them that you are open to talking more about this, so they can ask their questions and start feeling comfortable. 
  1. Cultural Beliefs and Social Norms
  • Be aware and mindful of the cultural background of your partner, or the social norms of your family. This will help you navigate the conversation about your hepatitis B/D. 
  • In many cultures, diseases like hepatitis B and D are associated with taboos. Culture can influence how people perceive these conditions and can create an atmosphere of fear and stigmatization. 
  • In some cultures, there are beliefs that influence how individuals view medical treatment. For example, seeking medical care may be seen as a sign of weakness or an admission of a “problem” that could negatively affect a person’s reputation. This perception may contribute to a negative attitude toward individuals affected by hepatitis B/D. 
  • In some cultures, family and community can provide significant support to individuals with chronic illnesses, such as hepatitis B/D. However, in other cultures, there may be more isolation and limited help, especially if the individual faces stigma. This impacts their emotional well-being and access to treatment. While all of these experiences can happen, know that you are not alone. You can learn more about others experiences through the Hepatitis B Foundation’s storytelling program or connect with others online through the Hep B Community.  

  

These aspects influence knowledge, attitudes, and reactions people may have toward hepatitis B/D. You deserve to be treated with respect and dignity—your life is your own, and no one has the right to diminish that. As you consider sharing your health status, it’s important to reflect on these factors and prepare for the range of responses you might encounter. 

How should you prepare? 

  • Tell those you trust: You do not have to tell everyone. 
  • Focus on facts, not fear: Many people react based on the information they lack, not the facts you know. 
  • Find an ally in the family who can help communicate with others. 
  • Do not blame yourself: It’s not your fault. This is a virus – not a shame. 

 

No matter how the conversation unfolds or what emotions surface, one thing is clear—your loved ones care deeply about your health and well-being. Speaking honestly and from the heart is always a meaningful step. What matters most is choosing the right moment and the words that feel true to you and your experience. 

You can read more about the importance of disclosing your status, and advice for telling your partner or family, in this blog.

About Hepatitis B, CAB Corner, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Living with Hepatitis B, Relationships

Importance of disclosing your hepatitis B and hepatitis D status

 

 

 

 

 

 

 

 

 

Written By: Soumen B., Silvana L., Partizan M. 

Thirteen years ago, I experienced a profound shock. My wife was in the third trimester of her pregnancy, and I was eagerly anticipating fatherhood, filled with plans for our future with the baby. As part of routine procedures, we both were asked to undergo various diagnostic tests. One day, the gynecologist unexpectedly called us in for an urgent meeting. I was asked to wait outside while my wife entered the doctor’s office. When she emerged after half an hour, I noticed a deeply worried expression in her eyes. As I greeted her, she responded with a blank stare, as if the world were crashing down around her.  

We returned home in silence, and then she broke down in tears. My wife shared with me that my blood test revealed I was infected with hepatitis B. How could this have entered my body? The doctor told my wife that the disease was terminal and that I might not survive for long. Our world began to crumble. I have always been a respectful and loyal family member with minimal alcohol consumption. How could this happen to me?  

The most challenging part was figuring out how to explain this to my wife… 

After I was diagnosed, I began online research and reached out to a nonprofit organization (Liver Foundation West Bengal). I gathered information about the disease and accessed health support. I then had an open and candid discussion with my wife, free of embellishments. I explained that I was one of millions affected worldwide and that the disease could have been transmitted through less common means, such as unsterile equipment used during a haircut, like razors, at the salon.* She was extremely cooperative and listened patiently. She also helped me confront the stigma and face the reality of the situation. My wife and I looked up more information so that we could learn about hepatitis B. We talked to our doctors to learn about how we can reduce the risk of transmission and maintain our health. My wife made sure to receive the hepatitis B vaccine, and we made certain that our baby received the vaccine immediately after childbirth.  

Later, I took her to meet members of the nonprofit, including experts and other patients, to engage in an open conversation about the disease and its implications. Both my wife and baby are now vaccinated and protected against hepatitis B infection. 

 

* Hepatitis B is highly infectious, and if tools and surfaces are not properly disinfected, it can survive for up to seven days. If you are exposed to hep B from a small wound (like the ones that happen during a short hair cut or shaving with tools that are not sterilized), even the smallest drops of blood from someone living with hepatitis B could cause an infection. Sexual transmission is a primary mode of transmission for hepatitis delta. 

 

Key Questions and Answers from this Story:  

If hepatitis B is sexually transmitted, how come my partner isn’t infected? 

Hepatitis B virus (and hepatitis delta virus) can be sexually transmitted. The virus is present in an infected person’s blood and bodily fluids commonly exchanged during sexual activity, such as semen and vaginal fluids. There are many reasons your partner might not be positive for hepatitis B after sexual activity including: 

  1. Vaccination status: If your partner has received the full schedule of the hepatitis B vaccine, they are likely protected. The vaccine prompts your body to start producing antibodies that neutralize (attack) the virus. This stops hepatitis B from infecting your body. 
  1. Viral load: The amount of hepatitis B in your blood and bodily fluids—known as the viral load—affects transmission risk. A lower viral load reduces the likelihood of transmitting the virus to your unprotected/unvaccinated partner during sexual contact. 
  1. Type of sexual activity: Different sexual practices carry varying levels of risk. Anal sex poses a higher risk due to potential tissue damage and blood contact. Oral sex is considered “less risky” since it is less likely that there will be blood contact. The presence of cuts or sores can increase one’s risk of infection. It is always a good idea to use protection (latex condoms) when engaging in any form of sexual contact. 
  1. Use of protection: Consistent and correct use of condoms significantly reduces the risk of hepatitis B transmission to your partner by preventing direct contact with infectious fluids. While condoms are crucial in reducing the risk of transmitting hepatitis B (and D) during sex, they do not eliminate the risk completely. New condoms must be used every time you and your partner have sex, from start to finish. Latex or polyurethane condoms are most effective; avoid natural skin (lambskin) condoms, as they are not as good at blocking the virus. 

  

For peace of mind and health assurance, you and your partner should consider: 

  • Testing: A blood test can determine if your partner has been exposed to hepatitis B or has developed immunity from a previous infection. If they are not protected, they should start the vaccination series. 
    • If you are living with hepatitis B, it is important to ask your doctor to test you for hepatitis D. 
  • Vaccination: If a person is not already vaccinated, receiving the hepatitis B vaccine is the only way that one can achieve full protection against the virus.  
    • There is no vaccine solely for hepatitis D, but since hepatitis D relies on hepatitis B to survive, the vaccine protects against both viruses. 
  • Discuss your status: If you are starting a new romantic or sexual relationship, you should consider telling your partner about your hepatitis B (or D) status before any sexual encounter. By sharing your status, you not only instill trust in your relationship and build confidence; you and your partner can also take the necessary steps towards reducing your risk of transmitting the virus.  

You can read more about tips and tricks about disclosing your status to family members in this blog

About Hepatitis B, Living with Hepatitis B, Relationships

How Do I Share My Status

Valentine’s Day is February 14th! Today is a day to express your love for family, friends, and your significant other.

When you are living with chronic hepatitis B, starting a loving, romantic, relationship and initiating sex can be fraught with stress and difficult disclosures, before an intimate relationship can even begin.

To begin, living with hepatitis B only makes up a small part of who you are, it doesn’t define you. As guest blogger Lindsey says, “Having HBV is only a small facet of who you are, and not a reason to give up on a loving relationship. A partner who accepts you as you are and wants the best for you is someone who will not see HBV as a barrier to getting to know you.” Someone who genuinely cares about your wellbeing will understand how vulnerable you needed to be to tell them you are living with hepatitis B and react appropriately. And remember, your partner might also have something to disclose to you! So, you should think about how you would respond to them, as well.

Although the most common mode of transmission worldwide is from mother-to-child, hepatitis B can be spread sexually. The hepatitis B virus can be transmitted through sexual fluids like semen and vaginal fluids, in fact, it is 50x-100x more infectious than HIV. It is important to note that hepatitis B is more common than people think, affecting about 300 million people worldwide. Most of the time, people were infected at birth due to exposure to blood from their mother, or at an early age due to an unsafe injection or medical/dental procedures, or even direct contact with blood inadvertently exchanged by an infected caregiver or another child while playing. Since the most common symptoms are no symptoms, most people are completely unaware that they have hepatitis B for decades.

How Do I Tell My Partner I Have Hepatitis B?

So how do you disclose your status to a partner you’re about to get intimate with? This can be a nerve-wracking situation because you don’t know how they will react. Also, when is the right time to tell someone you are living with hepatitis B? Sharing your status is an important step to take. It establishes trust within a relationship dynamic. Disclosing should be relatively the same for people who are seriously dating or casually dating.

  • Firstly, you should know some basics about hepatitis B in case your partner has questions about it. Bring a fact sheet with you to the conversation to share with your partner. This can help them digest more information.
  • Practice the conversation with someone who already knows your status, like a family member or a close friend. Prepare for best and worst scenarios.
  • Choose a meeting place you feel safe and comfortable with. An in-person conversation would be best, but you can always do it over the phone: video calling, calling, or texting are all good options too!
  • Ask them to keep your hepatitis B status confidential! Your health is your health to tell, no one else’s!
  • Give your partner personal space and time to process what you just told them and let them ask questions for clarity.
  • Look after your mental health after you tell your partner.

You might wonder: How do I start this conversation? Here are some conversation starter ideas:

  • Start out on a positive note – “I’m really happy with our relationship…” – sharing your hepatitis B status is something that is positive because it demonstrates trust and respect.
  • You can start talking about hepatitis B to gauge to their reaction and depending on their reaction you can decide to disclose or decide it is not the time or the person to do so.
  • Use this as an opportunity to talk about sexual health in general – it is always a good idea to share sexual health history with potential partners!
  • Be honest and direct: “I am living with hepatitis B, I take medication and manage it. If you have the vaccine you are immune to hepatitis B.”

Once you find someone worthy of your time and energy you want to date, they should consider your health to be an important priority. To reiterate: your hepatitis B status does not define you. You are more than hepatitis B and any person who you should date will know that.

About Hepatitis B, Living with Hepatitis B, Relationships

Your Sexual Health and Hepatitis B!

September is Sexual Health Month! This month we focus on the intersection of hepatitis B and sexual health.

Hepatitis B is the most common serious liver infection in the world with 300 million people chronically infected. It is caused by the hepatitis B virus that attacks and injures the liver. Hepatitis B can be spread through sexual contact. It is usually spread when blood, semen, or other body fluids from a person infected with the hepatitis B virus enter the body of someone who is not infected. In fact, hepatitis B is easily spread through sexual contact as it is 50x-100x more infectious than HIV.

Can I Kiss My Partner?

Yes! Spreading hepatitis B through kissing is highly unlikely, however, deep kissing that involves the exchange of large amounts of saliva might result in infection if there are cuts or abrasions in the mouth of the infected person, especially if they have a high viral load.

Does Type of Sexual Activity Matter?

Certain sexual activities are riskier at spreading hepatitis B than others. Oral sex appears to have a lower rate of hepatitis B transmission than vaginal sex. Anal sex carries a high risk of transmission because tears in the skin that can occur during penetration improves the transmission of hepatitis B.

Who Should be Vaccinated for Hepatitis B?

The great news is that there is a safe and effective vaccine for hepatitis B and is recommended for sexually active adults. Once vaccinated, a person should be protected from developing a hepatitis B infection even if they are exposed through sexual contact! Adults who especially should get the vaccine include:

  • People with multiple sexual partners
  • Anyone who has been diagnosed with a sexually transmitted disease
  • Men who have sexual encounters with other men
  • Sexual partners or close household contacts of someone living with hepatitis B

For adults, the vaccine is usually given as a series of 3 shots over a period of 6 months. In the U.S., there is also a 2-dose vaccine available that is given over 1 month. Whichever brand of vaccine you take, the entire series of shots is needed for long-term protection. If you are unaware of your hepatitis B status, ask your healthcare provider to get tested! More information on the simple hepatitis B testing can be found here!

Additional Prevention Methods

Practicing safe sex is also a great way to prevent the transmission of hepatitis B. If someone is living with hepatitis B and you don’t know your partner’s hepatitis B vaccine status, be sure to have sex with a condom to prevent the transmission of hepatitis B during intercourse. Sometimes during sex, people like to use personal lubricants. When using condoms it is important to remember to only use silicone or water-based lubricant. Oil-based lubricants increase the chance of ripping or tearing the condom.

 

Author: Evangeline Wang

Contact Information: info@hepb.org

About Hepatitis B, Hepatitis B Prevention, Relationships

Sexual Transmission and Hepatitis B Among Adults in China

As the birth-dose for hepatitis B (HBV) increases, sexual transmission is the most common mode of transmitting hepatitis B among unvaccinated adults. A research study, “Evaluating the independent influence of sexual transmission on HBV infection in China: a modeling study” evaluated the independent impact of sexual transmission on hepatitis B. This blog will give a summary of the results of the study, prevention tips, and future recommendations.

Summary of Research Study

 The researchers of this study developed an age- and sex-specific discrete model at the population level to evaluate the influence of sexual transmission on HBV infection in China. They found that in 2014, due to sexual transmission, the total number of chronic HBV infections in people aged 0–100 years increased by 292,581 people! That year, due to sexual transmission, there were  189,200 new chronic infections among men and 103,381 new chronic infections among women. In 2006, sexual transmission accounted for 24.76% (male: 31.33%, female: 17.94%) of acute HBV infections in China and in 2014, sexual transmission accounted for 34.59% (male: 42.93%, female: 25.73%) of acute HBV infections in China. These statistics demonstrate that acute HBV infections due to sexual transmission increased by 10% and 8% respectively from 2006-2014.

However, researchers found that if the condom usage rate increased by 10% annually starting in 2019, then compared with current practice, the total number of acute HBV infections from 2019 to 2035 would be reduced by 16.68% (male: 21.49%, female: 11.93%). The HBsAg prevalence in people aged 1–59 years in 2035 would be reduced to 2.01% (male: 2.40%, female: 1.58%).

Prevention and Harm Reduction Strategies During Sex

 Practicing safe sex is can be a great way to prevent the transmission of hepatitis B. Condoms are an effective way to prevent the transmission of hepatitis B during intercourse. Sometimes during sex, people like to use personal lubricants. When using condoms it is important to remember to only use silicone or water-based lubricant. Oil-based lubricants increase the chance of ripping or tearing the condom. It is highly recommended if someone is living with hepatitis B to have sex with a condom, however, if you are having sex without a condom, certain sexual activities are far more efficient at spreading hepatitis B than others. Oral sex appears to have a lower rate of hepatitis B transmission than vaginal sex. Anal sex carries a very high risk of transmission because tears in the skin can occur during penetration, allow more transmission routes for the virus.

Recommendations

If you have never been vaccinated for hepatitis B, it is recommended that you receive the vaccination. The hepatitis B vaccine is a safe and effective vaccine that is recommended for all infants at birth and for children up to 18 years. Since everyone is at some risk, all adults should seriously consider getting the hepatitis B vaccine for lifetime protection against preventable chronic liver disease. The hepatitis B vaccine is also known as the first “anti-cancer” vaccine because it prevents hepatitis B, the leading cause of liver cancer worldwide.

If you think you might be at increased risk for hepatitis B infection, is also recommended you get tested for hepatitis B. Hepatitis B is known as the” silent” infection, meaning you could be infected with the virus and not show symptoms that can cause long-term liver damage. If you have not been tested for hepatitis B and would like to know your status, you should get in contact with your primary care provider. Your physician should order a panel of three blood tests for the hepatitis B panel:

  1. HBsAg (hepatitis B surface antigen)
  2. Anti-HBs or HBsAb (hepatitis B surface antibody)
  3. anti-HBc or HBcAb (hepatitis B core antibody)

The results of all 3 blood test results are needed in order to make a diagnosis. Be sure to request a printed copy of your blood tests so that you fully understand which tests are positive or negative, and what your hepatitis B status is.

If you know you have had unprotected sexual intercourse with someone living with hepatitis B, there is something called post-exposure treatment. If an uninfected, unvaccinated person – or anyone who does not know their hepatitis B status – is exposed to the hepatitis B virus through contact with infected blood, a timely “postexposure prophylaxis” (PEP) can prevent infection and subsequent development of chronic infection or liver disease. This means a person should seek immediate medical attention (within 72 hours of exposure) to start the hepatitis B vaccine series. In some circumstances, a drug called “hepatitis B immune globulin” (HBIG) is recommended in addition to the hepatitis B vaccine for added protection.

 

Author: Evangeline Wang

Contact Information: info@hepb.org

HBV, Living with Hepatitis B, Relationships

Hepatitis B and Stigma

 

Hepatitis B and Stigma

World Kindness Day is just around the corner on November 13th. On World Kindness Day, we celebrate kindness and spread it around the world. Let’s celebrate this day by treating people living with hepatitis B with kindness, compassion, and respect.

Unfortunately, hepatitis B is often highly stigmatized – and the people living with it can feel ostracized. Why is there so much stigma surrounding hepatitis B? A study found that among Asians, the majority thought hepatitis B was a genetic disease which is why the family might feel stigmatized if a family member is living with it.1 Due to cultural values, interdependence, collectivism, and family centeredness, persons of Asian descent might think that having hepatitis B is a reflection on the family.1 This attitude could lead to people not wanting to get tested for hepatitis B because they worry about bringing stigma to the family.1 Another study found that among African communities, individuals were confused about the differences between hepatitis B, HIV, malaria, and other infectious diseases.2 This misattribution and confusion could lead to a person living with hepatitis B being perceived as an outsider to society and can cause stigma or discrimination.2

The studies demonstrate that the lack of education and information surrounding hepatitis B contributes to the stigma that individuals living with hepatitis B face. There is a lot of ignorance, myths, and misconceptions about hepatitis B. Let’s debunk some of these notions!

Hepatitis B cannot be spread through casual contact, only through blood-to-blood contact or sexual transmission. This means you can hug, kiss, and share a meal with your friends and family without worrying about contracting hepatitis B. In Asian communities, it is especially important to emphasize that family members living with an individual who has hepatitis B, can share meals with each other. And there is a safe and effective vaccine to protect loved ones – so transmission can be prevented!

Sometimes people do not want to discuss their hepatitis B status because of its association with intravenous drug use. People who inject drugs experience more discrimination because of the stigma surrounding addiction. On the flip side, individuals who do not inject drugs but are living with hepatitis B, might not want to discuss their status for fear that other people will stigmatize or label them as drug users. Additionally, people might assume individuals living with hepatitis B engage in risky sexual behavior which can further stigmatize them. This stigmatization only harms people living with hepatitis B because they cannot talk about their status openly, which would help destigmatize the disease.

Even extending past World Kindness Day, we encourage you to be kind to people living with hepatitis B. And if you are living with hepatitis B, please be kind to yourself! Continue to educate yourselves on hepatitis B to help lessen the stigma and discrimination surrounding it.

Below is a brief list of resources for people living with hepatitis B or individuals living with people living with hepatitis B.

  1. Transmission of hepatitis B – how hepatitis B can be transmitted
  2. Online Support Groups
  3. Factsheet – When Someone in the Family has Hepatitis B
  4. Know Your Rights – for anyone experiencing discrimination because of their hepatitis B status

References

  1. Kim, M. J., Lee, H., Kiang, P., Watanabe, P., Torres, M. I., Halon, P., Shi, L., & Church, D. R. (2015). Debunking the myth: low knowledge levels of HBV infection among Asian American college students. Asia-Pacific journal of oncology nursing, 2(1), 8–16. https://doi.org/10.4103/2347-5625.152399
  2. Mokaya, J., McNaughton, A. L., Burbridge, L., Maponga, T., O’Hara, G., Andersson, M., Seeley, J., & Matthews, P. C. (2018). A blind spot? Confronting the stigma of hepatitis B virus (HBV) infection – A systematic review. Wellcome open research, 3, 29. https://doi.org/10.12688/wellcomeopenres.14273.2

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

About Hepatitis B, HBV, Living with Hepatitis B, Relationships

National Family Caregivers Month and Hepatitis B

November is National Family Caregivers Month! There are over 40 million Americans who are unpaid caregivers to their families, friends, and neighbors1. This month we celebrate and support all the caregivers who work tirelessly to keep our family and communities strong.

Caregivers and Hepatitis B

 Caregiving can be a tough, but noble job. It is often unpaid, long hours, and can cause burnout. However, caregivers selflessly work to provide their friends or family with the best care possible. Hepatitis B just does not affect the person living with the virus; it affects their family, friends, coworkers, and community members. Someone who lives with an individual who has hepatitis B might be put in a caregiver position.

Caring for an individual living with hepatitis B might be difficult if the person has advanced liver disease or is experiencing side effects from medication. While it may not always be physically demanding, caring for a person with hepatitis B can be emotionally overwhelming. Caring for an individual living with hepatitis B and other related complications can stir up heavy emotions which can take a toll on a caregiver’s mental health. Managing medications, diet, and healthy lifestyle for people living with hepatitis B during the COVID-19 pandemic can especially feel stressful. Luckily, there are resources available to help reduce feelings of stress and being overwhelmed.

Resources for Caregivers

Feeling stressed or overwhelmed with taking care of your friend or family member? It is also important to look after your own physical and mental health. Check out these resources from the How Right Now Initiative to help you manage your stress especially during COVID-19. Some suggestions include:

  1. Go for a quick walk or stretch
  2. Call, text, or video chat with friends or family
  3. Take several deep breaths

Does someone in your close circle have hepatitis B? Check out the Centers For Disease Control and Prevention’s Know Hepatitis B Campaign’s fact sheet, “When Someone in the Family has Hepatitis B”. This fact sheet has basic information about hepatitis B and the importance of testing and vaccinating family members. The fact sheet is available in 13 Asian and African languages as well as three English versions focused on Asian American, Native Hawaiian and Pacific Islander, and African Immigrant communities. Download the fact sheet here.

For more information about the Know Hepatitis B Campaign, visit the campaign website.

References

  1. https://www.whitehouse.gov/presidential-actions/proclamation-national-family-caregivers-month-2020/
  2. How Right Now Initiative
  3. CDC’s Know Hepatitis B Campaign

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

Living with Hepatitis B, Relationships

I Have Hepatitis B; Can I Get Married?

At the Hepatitis B Foundation, we answer thousands of calls, social media messages, and emails a year from individuals affected by hepatitis B. One of the most common questions we receive is: If I have hepatitis B, can I still get married? 

To put it simply, yes, a person living with hepatitis B can get married. In fact, a healthy relationship can be a source of love and support for those who may feel alone in their diagnosis.

Transmission of hepatitis B can be prevented in your partner; it’s a vaccine preventable disease! Keep in mind that hep B is common in many parts of the world. When properly tested, people often learn they too are living with chronic hep B or that they have recovered from a past infection. A hepatitis B triple panel blood test (HBsAg, HBcAb total and HBsAb) will let your partner know if they have a current infection, have recovered from a past infection and whether or not they need to be vaccinated.  Future children should also be vaccinated starting as a newborn to help prevent transmission, especially if the mother is hepatitis B surface antigen positive (HBsAg+)!

If your partner is waiting for the vaccine or is unable to be vaccinated for some reason, there are other precautions that one can take to prevent transmission: practice safe sex by using a condom, properly wrap all wounds, clean up any spilled blood with gloves and a fresh solution of 1 part bleach to 9 parts water, and don’t share sharp personal items (razors, toothbrushes, nail clippers, and body jewelry). This list may seem like a lot, but they are mostly things that we do every day without thinking much about it! 

Physically, there are no barriers that prevent an individual living with hepatitis B from getting married. The question often stems from a place of fear that is fueled by the stigma and discrimination around them. Oftentimes, we give fear too much power in our lives. It can control our actions and cause us to isolate ourselves. It’s important to remember that an individual is not their diagnosis. The essence of who you are as a person has not changed! 

Many of our #justB storytellers are leading happily married lives with supportive spouses who help them maintain a healthy lifestyle. Chenda was already engaged when she first discovered that she was living with hepatitis B. She said, “ When my fiance called, I was scared to answer but I told him the truth. He said ‘I love you’ and encouraged me to see a doctor”. Chenda and her husband now have a baby who they made sure was protected from the virus! Another storyteller, Heng, shares how he felt when the woman he was in love with told him that she was living with hepatitis B. After she told him, he got tested and found out he was already protected due to the vaccine! They later married and had children. “We make better lifestyle choices because of her illness, but we don’t let it define our lives”. 

Hepatitis B is not a weakness. Each day, millions of people living with chronic hepatitis B make the choice to wake up and live life to the fullest. Like many others, Edwin – one of our new #just B storytellers – was surprised by his diagnosis. Instead of letting it hold him back, he decided to show the world how strong he was by competing in a series of rigorous athletic competitions to set an example for others like him. “I want to show that Hepatitis B is not a condition that debilitates someone,” said Edwin.  “We can triumph through adversity.” 

Our #justB storytellers are examples of hope, inspiration, and strength; they are people living their truths.They also remind us that the difficulties that we face in life can make us stronger as a person. Despite the fear that Bright felt, he persevered and took action. “Slowly I started to have days when I wasn’t hopeless, when I could face the unknown. I talked to my doctors, did my own research, and made my own decisions….Now I realize I have changed: I am more resilient than ever before.”

Living with Hepatitis B, Relationships

If I Have Hepatitis B, Why Doesn’t My Partner?

Why do some people — who were not vaccinated — never get hepatitis B from their sexual partners? The question is a common one.  As a sexually transmitted disease, it may seem obvious that your partner may contract hepatitis B from their partner, especially if you have been together for some time.

It comes down to factors, such as the type of sexual activity you engage in, the viral load (HBV DNA) of the infected partner, and who is on the receiving end of infectious body fluids, especially blood that contains the most virus, and semen.

Having one partner infected, while the other is not, can add more

stress to an already traumatic hepatitis B diagnosis. “It was very confusing and made me question how was it possible I was the only one infected,” said a woman who tested positive while her husband tested negative.  “I thought it was possibly a mistake, maybe I was a biological anomaly, which of course I was not.”

Let’s look at the factors that affect who gets infected and who doesn’t when two people have sex.

Viral load: Semen, vaginal fluids and blood all contain the hepatitis B virus (HBV), and the higher the viral load, the more infectious a person is considered to be. However, having an undetectable viral load doesn’t mean you won’t infect someone during unsafe sex. Even if a man has an undetectable viral load, studies show his semen still contains some of the virus and can spread infection, though the risk is lower.

Essentially, if a man tests positive for the hepatitis B surface antigen (HBsAg), he must consider himself infectious.

The role of gender: In heterosexual relationships, uninfected women are at higher risk of getting infected by a male partner infected with hepatitis B, rather than the reverse. Women are on the receiving end of semen, which greatly increases their risk of becoming infected unless a condom is used.

When a woman is infected with hepatitis B, an uninfected man is at risk through direct contact with her vaginal secretions, but that contact is lower-risk than a woman’s direct exposure to infectious semen during intercourse.

However, an infected woman who is menstruating is more likely to spread hepatitis B because blood can contain higher levels of HBV than vaginal secretions. That is why gloves and dental dams are recommended to provide a barrier against exposure.

The type of sexual activity: Certain sexual activities are far more efficient at spreading hepatitis B than others. Oral sex appears to have a lower rate of hepatitis B transmission than vaginal sex. Anal sex carries a very high risk of transmission because of tears in the skin that can occur during penetration, which improves transmission of HBV.

Fingering carries a lesser risk, unless the infected woman is menstruating or a person has bruises or cuts on their hands that allow entry of hepatitis B virus from the body fluid into the bloodstream.  In such cases, gloves are recommended.

The “uninfected” partner could already have been infected and cleared hepatitis B: When a person is first diagnosed with hepatitis B, doctors often test his or her partner for only the hepatitis B surface antigen (HBsAg), which indicates a current hepatitis B infection. If they are negative for HBsAg, they are immediately vaccinated. However, this does not mean that they were never infected.

If the partner isn’t also tested for the hepatitis B surface antibody (anti-HBs or HBsAb), then no one knows if the individual was already protected, either due to recovery from a past hepatitis B infection or because they had already been vaccinated.

Hepatitis B is not called the “silent” infection for nothing — many people who get hepatitis B never have any symptoms and never realize they were infected. As a result, a wife, husband, partner or lover who tested negative for HBsAg, may actually have been

infected in the past and cleared the infection and now has protective hepatitis B surface antibodies to forever safeguard them from infection. If they’re immediately vaccinated and retested after the three-dose vaccination, they will test positive for surface antibodies, without ever knowing that their antibodies resulted from a past infection, not immunization.

Bottom line, if one of you have been diagnosed and the other is not infected, it is unusual but not uncommon. Get tested using the 3-panel blood test (HBsAg, HBsAb, and HBcAb) and immediately vaccinated if the uninfected partner tests negative for the hepatitis B surface antibody (HBsAb).

Take a quiz to find out how much you know about hepatitis B transmission: click here.

Hepatitis B Advocacy, Living with Hepatitis B, Relationships

Patient Perspective: Living with Chronic Hepatitis B & Fighting it On All Fronts

 

This post is by guest blogger Mariam. Mariam works at a charity cancer hospital and is interested in philosophy. She is currently learning french and enjoys spending time by herself and the mountains. 

When you are first told that you have a chronic disease that is treatable but has no cure, you are suddenly confronted with an enemy on multiple fronts—you have to fight it within your body, inside your mind, your heart and in the outside world. Chronic hepatitis B: nearly 15 million people are living with it in Pakistan. In the world, 292 million people are silently suffering from this , and most are unaware (which is 9 out of 10 people globally). It is a tragedy that 2 out of 3 liver-related deaths are caused by this infection which is preventable and treatable. There are many reasons why this disease is prevalent in a developing country like Pakistan that lacks a proper healthcare system; where there are no pregnancy screenings or an effective mechanism to ensure babies are vaccinated against this. It’s an infection that can be transferred through blood (most commonly from an infected mother to her baby during delivery)  and sexual intercourse and  so it is not difficult to understand how this disease travels from one generation to another, silently. Elimination of viral hepatitis by 2030 is one of the millennium goals of the World Health Organization, but we cannot achieve this without dedicated efforts by all the stakeholders that include health-care professionals, patients, media, and policy-makers. I am primarily interested in sharing the patient’s perspective, in hopes that it will encourage others to fight this epidemic.

A Patient’s Point of View

The fact it’s a chronic illness means you are in for the long haul and you have to be prepared to take care of yourself by regular monitoring/medications (depending on what stage you are at) for the rest of your life. One can argue that’s bad but it’s not a big deal as we have people who suffer from high blood pressure, bad eyesight, or diabetes and they also have to regularly take care of themselves. The problem is that hepatitis B is an infectious disease, a fact that contributes towards stigma surrounding its diagnosis. Suffering from flu makes me feel like a hazard to others. Having an infection that I cannot get rid-off certainly makes me feel bad and, in a way, dirty. I have to be cautious and aware that my blood is hazardous for others and I have to be constantly aware of all the possibilities I can be harmful and ways to prevent it. It’s a progressive disease which can be treated at a certain point, so when you go to follow-up appointments, you feel like a ticking bomb is inside you and you need to be able to identify the period when the bomb goes off so you can treat the damage. Because current hepatitis B medications are most effective when there are signs of liver damage, the treatment is often only given during this phase. The inherent uncertainty makes you hate hepatitis B.

Fighting Discrimination and Stigma

Living in a conservative society, if you are one of the few fortunate ones aware of your diagnosis, how do you deal with it? I kept it to myself because I did not want people to define me through my illness. I did not tell my parents or friends because I did not want them to see me as ill or worse, to pity me. I needed time to process it without having to deal with other’s opinions and judgments. Three years ago, I was diagnosed with hepatitis B during regular pre-employment screening. I did not even know anything about this disease. I had a biopsy to determine the stage of the disease. Then I went to a few follow-ups. Unfortunately, after a while, I stopped because I did not want to think about this illness. I wanted to forget about it so I tucked it away, in the farthest corner of my mind. I did not know many people with whom I felt safe talking about this. Until one day, I was at a fundraising event for a charity cancer hospital where I got the chance to sit with a doctor. He was a stranger and a doctor, so in a way I felt safe telling him why I’m so interested in trying to understand where my country stands in the fight against hepatitis B—I told him I was diagnosed with it. At one point he asked me if I’m on treatment,  and I honestly told him I am supposed to be on follow-up. He said, “What do you mean, supposed to be?” That slight hint of disappointment made me feel I failed in taking care of myself. It’s easier to sound irrational inside your head but when you share it out loud, it does not feel nice. He told me that first, I need to sort out myself before trying to make a difference in the world of hepatitis B. I am grateful for the brief discussion with him which gave me the courage to think about re-scheduling my long overdue follow-up appointment. It gave me the clarity that I wanted to share my story with others in hopes that those who are fighting hepatitis know they are not alone. Sharing my story also helps me feel that I am not alone either.

I feel it is very important to fight the stigma surrounding hepatitis. Only then we will be able to talk about it and bust the myths. Only then we will be able to discuss ways to fight it on the ground. It is common in a conservative society to put a label on you as defective and exclude you from everything. For instance, marriage is still, by large, the union in this culture after which people have sexual intercourse and have kids; both occasions that can be possible causes of transmission of this virus. If, before marriage, a person is aware of their diagnosis, they can ensure that their partner is vaccinated and safe. However, in this society, there is also a prevalent culture of arranged marriage which makes this whole discussion almost impossible because so-called “perfection” is demanded. I wonder if submitting your hepatitis status with a marriage certificate was compulsory, would it help in data collection and early detection of this disease or would it encourage stereotyping. What if it was possible to vaccinate every child who starts school to be vaccinated against hepatitis B? After all, mandatory vaccinations are common in other countries. But what about children who can’t afford to go to a school? Can we link hepatitis B vaccination confirmation mandatory with every birth certification? This works in many other countries that vaccinate every baby born – we need to able to fight hepatitis B with a strong response such as this.

I also have an obsession with trying to understand this virus that is sharing my body. So my brain imagined a story to help understand how the chronic hepatitis B works. There are the good guys (liver cells) and bad guys (virus) who grew up together quite happily. Until one day, the good guys realized that these other guys are not from amongst us, let’s kill them. There is a battle and then there is collateral damage. What I want to understand is, if the bad guys aren’t harming the good guys, then why does the body start fighting them? And what is the purpose of their existence if they are not bad guys by default? Perhaps one day someone will help answer my questions. Until then, I’ll try to focus on the inevitable fight.

 

Baruch S. Blumberg Institute