Hep B Blog

To Disclose or Not to Disclose, That is the Question

Choosing to disclose, or not to disclose your hepatitis B status is a very personal decision.  The key thing to keep in mind is that once this private information is out, it cannot be reeled back in.  It’s best to stop, and give it serious thought before you move forward with your decision.

Being diagnosed with a chronic illness can be overwhelming.  Many are shocked by their HBV diagnosis. Some have been living with HBV since birth, but because it is often a silent infection, with few to no symptoms, they are surprised they are infected.  Others may have no idea how they were infected. A support network of friends, family and loved ones is important at this time.  Sadly, your news may elicit a variety of responses, from loving support to complete avoidance.  Unfortunately, there is often a stigma associated with HBV.  People are afraid of what they don’t understand, and most are ignorant about infectious diseases.  It’s something that happens to someone else.  Little do they know that HBV does not discriminate.

Here are some important points to consider:

  • Location – Where do you live?  If you live in a large city or community, you may be able to better pick and choose who learns of your HBV status. In a larger community you may have a little more flexibility to move around, or make changes if your HBV disclosure is a problem.  If you live in a small town, with few employment opportunities, and a hand-full of nosy neighbors, you might want to think long and hard about telling anyone in your community.
  • Family – Only you know your family.  Depending on your ethnic background, there may be a cultural stigma associated with having HBV. Break the news gently and be prepared to supply easy-to-understand information. Remember there is the possibility that you acquired your HBV infection at birth, and other family members may be at risk and need to be tested.
  • Work – Unless you are symptomatic and missing work due to your HBV, it might be a good idea to keep your hepatitis B status under wraps.  In many countries, an HBV infection destroys careers.  Even subtle discrimination can ruin your reputation at work.  If you require time off due to HBV, be sure to take it up with human resources.  Your information will be kept confidential.
  • Sexual partners – It is more important than ever to ensure you are having protected sex if you are not in a monogamous relationship. If you have HBV, you do not want a coinfection with another infectious disease like HCV or HIV.  Insist on protection, and use a condom.  You owe it to yourself and your partner(s).  Be sure any significant others are vaccinated.  If you believe they have been exposed, then they need to be tested. The flip-side is the concern with a relationship that turns serious, where you have not yet disclosed your HBV status. This is a difficult balance.  They may be hurt or angry that you did not disclose, earlier, and yet you don’t want to enter every new relationship spilling all of your private info.
  • Friends – Friends have been made and lost over personal information such as HBV disclosure. If they can’t accept you, living with HBV, who needs that kind of friend?  This is true, as long as they will respect your privacy and choose not to disclose your private information to others. Take a good look at your friends, and remember that many really are acquaintances.   Acquaintances do not need to know the details of your HBV status.  It’s your choice who you decide to tell.
  • Medical professionals – All health care providers must practice infectious disease protocols and standard precautions.   It keeps everyone safe.  That being said, it is important that your doctor is aware of your status.  He is making treatment decisions and prescribing medications that could effect your liver health. HIPAA regulations will keep your private information protected at medical offices.
  • Support groups – It might be difficult to find a traditional hepatitis B support group, but there are wonderful on-line HBV support groups out there.  This is a great environment to query others living with HBV about who they choose to tell and not tell.  It helps to hear it from others that truly understand what you are going through.  Friends and family may love you, but it’s very possible they won’t fully understand what you’re going through.   As the newness of your HBV diagnosis wears off, I can promise that things will get better.  Give yourself a little time….

Disclosure truly is a personal decision. There is no right or wrong answer.  Much depends on your personality and what you can live with. When you make the decision to disclose, you need to make the commitment to educate.  This is admirable because it takes courage to stand up, raise awareness, and be out there with your personal story.  The response from others may surprise you – for better or for worse!  Just remember that before you decide to disclose, you had best be informed.  Educate yourself, so you can educate others on the HBV basics and help raise awareness.  Let friends know  how HBV is transmitted.  Encourage hepatitis B vaccination. Arm yourself with simple explanations.  Your goal is not to scare your audience, but rather raise their awareness of those living with hepatitis B.  Remember it’s your decision, but take your time…

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