Do you disclose your diagnosis to people around you

Living With Hep B
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Hi everyone,

  1. I would like to ask if how or do you disclose your diagnosis to people around you? (ex. friends, relatives, neighbors, workmates, housemates, doctors, dentist, nurses)
  2. How do you deal with the stigma of having HBV with the people around you?

Thank you for your response.

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Hi Platwooo,

I don’t share such personal or confidential information, and I shouldn’t with anyone except my wife and a couple of others with whom I shared it in an excitement six months ago. The reaction will be unfavorable, and you’ll lose your social life, maybe even your job. People always talk too much. Live as you always have, but without alcohol and see a doctor to control the virus.

2. Stigma: I’m sad sometimes, of course, but I’m trying to live positively, and I’m waiting for treatment for the chronic virus to become available. But as they wrote here, you’re not radioactive.

I found community few months ago and reading topics and it really helps me and give a hope.

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Hi @Platwooo,
These are great questions. In my opinion, it is a courtesy for us to share; it is not a right for others to know. There are no standards or formulas for this. It depends on the trust and how comfortable one is about sharing. Aside from the typical negative responses, such as rejection, cold shoulder, isolation, distancing, among others, which are real, in my experience, I actually found support and was able to educate the people closest to me to get screened and vaccinated. I did not lose any friends over it, nor did I feel stigmatized. I did not share it outside my family and close friends (initially). However, now, due to the nature of my volunteerism as a patient advocate, the entire world is probably aware of my status, and I am not bothered by it. However, this may be different for others; your level of comfort and the trust you have can make a significant difference.

I also made a decision years ago not to let what people say or think about me bother me too much, especially if they are not my family or friends. Strangers’ opinions and their attitude do not matter to me. Why? Because I don’t know them, and they can go pound sand.

Living with hepatitis B is not something that is on my mind. I only think and talk about it when I am asked a question, when I chat with my doctors, siblings, or friends, on this platform, and when I am due for my tests/appointments. Other than these instances, it is not something I think about when I am around people. I try to live and enjoy life just like everyone, but in my own way. That is how I have dealt with these issues. Best, Bansah1

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It depends on regions, for example in my country (Mauritania) where Hepatitis B is common and the vast majority of population (those who were born before 2005) had already contamned the virus and are of the 90% type of people who got self immunity, the Hepatitis B is not considered a stigma.

I guess, in Europe, US, Australia & New Zealand the HBV is rare and so are the infected people are feared by other people.

In my situation I frankly share my status with family, friends and acquaintances, no stigma at all.

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I wish you are not talking about your situation to any body. What if you give someone a knife to protect themselves, but turned against you when hostility happend. I have seen good Samaritan some time attacked.

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I now tell complete strangers: I had a pleasant chat on the train about hepatitis B both in the context of my work and my lived experience of it. I feel like educating myself on the condition and knowing it inside and out allows me to control the situation - particularly given most people don’t know what it is and how it works. You get to be the person to provide them with that information and probably limit the amount of prejudice in the world because of it. It is not necessary for everyone to do this (particularly if they don’t feel comfortable), but if more of us can do this, it’ll help other in feeling less alone and less stigma.

I’ve also found that it helps me be less self-stigmatising and less self-conscious about my hepatitis B: understanding makes me more confident in myself.

Thomas

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Thomas You may be right, but I suspect people will run away from me and my circle and fear me like the plague of the 21st century, especially at work. Sailors are always gossiping because of the nature of their work and the minimal information available, even though many ships already have internet access. I’ll definitely refrain from that. This group is a great resource for sharing joy and sorrow, listening to experiences and advice. Hugs to everyone!

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