Hi everyone,
Thank you for your response.
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.
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
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.
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.
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
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!
Hi @gelo,
Yes, completely understand and everyone’s context is very different. You need to act in a way that keeps you safe and supported. We have advocates out there all trying to change society’s view on people with hepatitis B but this is slow, and not always successful, work.
TT
Hi Thomas. Perhaps I’m not self confident to share the info… I’m still wondering re my work during my medical examination for visas and certain region of the projects at sea. Therefore I keep it with me… Let’s hope all will be fine , we covered by GDPR in my country so far. Need a time to not worry at all re surrounded people.
Cheers.
Gelo
Hello @ThomasTu, Can you tell how did you disclose your situation with your close friend when you are diagnosed for the first time? Did your friendship goes well? Did they support you? For me, I am hesitant if I should disclose it to them because I don’t want to ruin the friendship. I have a friend that is a nurse and a dentist and 2 others which I think are not yet vaccinated and when they talk about Hepa topic, I just listen and they treat it as disgusting/gross if you have that kind of disease. I want to protect them but disclosing is very hard.
Hi @Platwooo,
It took me some time before I felt ready to share my status. I felt like after I got enough information to be able to answer questions that the other person might ask, I just came out and discussed it with them. None of my friendships have been affected by my having hepatitis B and everyone has been supportive.
The situation you are in is quite difficult, but as health care professionals, they should be a bit more educated about the real (limited) risks of hepatitis B, particularly after they have been vaccinated.
Thomas