Hi everyone, it’s great to find a community like this. Reading posts from the community makes me feel so connected and reassured that I’m not alone.
I was born with Chronic Hepatitis B (CHB), passed from my mother. I’ve been taking Entecavir for many years, and I also go to hospital to check my liver twice a year. My virus is undetetable, and my health status is stable, but I still feel confused when it comes to building sexual relationships with someone else.
Recently, I went out with a guy several times, then things naturally progressed to the sexual stage. Before anything happen, I told him about my CHB sincerely, including how I got it, what treatment I’m using, what my current health status is, what measures to consider if he agrees to have sex, such as condom, health check, and vaccine, etc. I wanted him to be fully informed and understand that CHB is not a dreadful disease. However, his reaction hurt my feelings badly. He questioned me in a row, like why I hadn’t told him earlier (We had only met for less than a month), why I had kissed with him. He even questioned me about the dead blood under my toenails, speculating if it was related to HBV. In reality, it just resulted from a hiking trip which I walked too much downhills! Overall, his response was so ignorant and arrogant. This experience has made me question that how am I supposed to deal with sexual relationships.
Could you please offer me some advice? When you’re about to have sex with someone, but your relationship isn’t deep, I mean it’s still in the casual stage, how do you deal with disclosing your disease? It feels like wherther or not telling the truth, you’re always in a passive situation. Or should I just cut all the potential sexual relationships and remain celibate?
Hi @Maria9,
Welcome to the community. I sincerely share your pain and do empathize with you. This things happens a lot, so don’t punish yourself about it. You did not do anything wrong. It is frustrating and horrible experience. Try this and see if that works, we all need love and need to find just the right person. Maybe try having this conversation early if you are comfortable before you invest emotionally into the relationship. This way if you experience something like this it won’t hurt as much because you have not committed yourself deeply (emotionally especially) in the relationship. Many people react that way because they do not know much about HBV, that is why education about this virus is important.
There are colleagues on here who have gone through similar experiences, not easy and straightforward but do not give up. I hope this is helpful somehow. Bansah1
I understand your point about disclosing HBV before investing emotionally. However, I don’t feel comfortable sharing my personal health issue without knowing a person, To some extent, there must be some emotional investment before truly knowing someone, so I really don’t know, seems a bit like a paradox.
Sure, I understand your point. There is no formula for this. It’s solely based on how comfortable the person is to share their status and when they do it. But also be prepared for the not so great reaction. Some people react well and others badly. It is challenging, but you don’t have to give up completely on this. We keep open and hopefully, we find someone that will love and care for us no matter what is going on with us. It’s possible.
Best, Bansah1.
Welcome to the community. I’ve struggled with disclosing CHB status to potential partners as well, and that’s why I feel more CHB awareness and advocacy campaigns are needed to prevent stimga within our society.
However, the more stories I read similar to yours, the more I begin to feel like it’s not our responisbility or burden to care for the opinion of people who have no idea what it feels like have CHB. There isn’t a law (in my country) requiring the disclosure of CHB.
As for sexual / relationship encounters, I try to disclose causally early, with similar explanation that you have provided in the introduction. Then, they can decide if they are ok with it before I invest too much in a relationship. There will be people that are not understanding, but there are compasonate people out there.
Thank you for your insight. I appreciate it. I think I’ll keep trying. After all, having CHB is not my choice. The only solution is to try to live with it in every aspect of life.
Thank you for sharing your thoughts and experience.
I agree that more CHB awareness and advocacy campaigns are needed in every society. It shouldn’t be a burden for us.
Also, it means a lot to me to know that there are others who understand the challenges of disclosing CHB to potential partners. Despite encountering some bad experence, it’s heartening to know that there are compassionate individuals out there.
As a chronic hepatitis B carrier, I’m sick and tired of having to disclose my “illness” (I’ve never had any symptoms!) to potential sexual partners. I often ask myself the following question: If hepatitis B is so dangerous, why is the vaccine not recommended to every sexually active adult? After all, it is recommended for newborn children, even though they are at no risk whatsoever from the virus (unless their mother carries it). There’s a lot about this virus that I don’t understand. All I know is the diagnosis has ruined my life and I wish I never found out. Ignorance is bliss.
Hi @Barry,
I agree with your point. At least in the US now all adults can get tested and vaccinated as a policy. This should have happened many many years ago. It is burdensome at times, but we keep moving forward. One day at a time. Best, Bansah1
Hi Bansah1: I’m not sure where I stand on testing. I’m inclined to think that if a person has no symptoms, they shouldn’t get tested. I say this because the psychological burden following the diagnosis is just too great. As for the vaccine, no doctor ever recommended it to me (I’m in Europe), yet it is recommended for all newborn babies. This makes no sense to me. It should surely be the other way around: recommend the vaccine for all sexually active adults and not for newborn babies.
Hi @Barry,
I definitely recognise and acknowledge the emotional and psychological burden that HBV diagnosis puts on people. It cannot be ignored. With that said, testing is important to avoid further transmission (we can vaccinate all negative patient after testing to prevent transmission) and also help find and treat those who are or might be at risk of severe liver damage. I don’t think many patients with HBV today would have found out about their status if we go by your argument that no testing in the absence of symptoms. In my view, I feel that I am morally and ethically obligated to get screened so I can avoid infecting others. I cannot live with the guilt of knowing that I might have infected someone. Rather I deal with the emotional and psychological burden of testing and being diagnosed; than deal with the guilt of knowing I have infected someone.
On the vaccination front, you have a point there. We can both agree here, but I will argue that everyone gets tested and vaccinated, not just children or babies or sexually active adults. Most people with HBV did not get it sexually, rather via mother-to-child transmission during birth. It is therefore important to vaccinate those babies/children (who have about 90% chance of developing a chronic infection) and adults (who have about 5-10% chance of a chronic infection) whether sexually active or not. We are missing many people who might have benefited from vaccinations. We all do better when we know more. We improve as we move forward. Great conversation. Bansah1
I’ve been through a very similar situation in the past so hoping sharing this will help
Looking back I’m relieved things didn’t progress with that previous person because it led me to meet my current husband
In both situations, I was upfront about my status early on
I think how someone reacts can reveal a lot about their character and seriousness of the relationship even in early stages. I liked that my now husband understood the science behind how those things work and was almost surprised I thought it might impact our relationship negatively (unlike my past experience)
I know staying positive can be though especially in those situations but there is really potential in good outcomes and finding something really great on the other side
Hi @Maria9 sorry to hear about your experience! Maybe give him time? But if you feel he was too rude then there’s someone better out there for you. My s/o was shocked when I initially told her (but was not rude at all) and had TONS of questions, I was patient and answered all her questions and she even did her own research and later told me her reaction was due to lack of knowledge on her end. Hep B is not one of those things people talk about much so many folks are unaware of it and that it doesn’t have to be this scary thing. Best of luck to you!
I’ve just experienced the same dreadful feeling last week. As for my understanding with my virus levels being so low I’m not even contagious and even hadn’t had to tell him anything since it was our first date. The guy have a doctors degree and I assumed that he must be very open minded and not judgmental, I was wrong… and my sincere honesty got me hurt badly… luckily I’m a very confident person and it took me few days to get over the fact that if he is an infantile and a coward, doesn’t mean every man is like this. And I had a long relationship before, I’ve disclosed previously my status very late into the relationship… he didn’t get nothing from me and it haven’t influenced our relationship at all we’d been together for 10 years… so, I suppose it can be a great test if the person takes you seriously enough not to be afraid of this condition and be willing to be there for you whatever you might have. Let’s not forget that 2/3 of infected people don’t aware of it so there’s nothing to disclose, and it can be so dangerous because they don’t have their regular check ups and might infect others without knowing it… to speak about hep b is to for one doing the other person a favor so they can get vaccinated and be safe in the future, and more importantly we as a community have the obligation to arise the awareness of this condition, so the ignorant public out there won’t be scared of it by reading nonsense online such transmission from kissing! Be safe and confident in yourself girl, there are men who are truly deserve to be with you but have to prove that first
Hi Maria,
I don’t think ANY of asked for this disease. I’ve gotten a lot of info on the sexual taboos and am led to understand it’s generally agreed that there’s a moral obligation to tell a prospective partner about the disease. So much uncertainty about when it’s active, when it’s dormant.
It’s so hard to just give up the previous gift of intimacy, maybe never realized as much as when you lose it. I’m married to a wonderful woman who prefers not to even kiss me on the lips.
They say the best bet is to find someone else diagnosed with it as you can’t get it twice (sick joke) or has been vaccinated but VACCINATED AND trusting of the science which makes it that much harder to find someone
I keep being reminded that sex isn’t everything but I’m not sure I’m okay with dying without ever having experienced closeness of this kind with someone again.
I like to think we’re perhaps a little more emotionally fragile in one sense but so strong in so many other ways.
Remember, reactions about disclosure says a LOT more about the person hearing the news than the one sharing it.
Denny
I just wanted to thank you all for sharing your experiences with this subject. You have made a lot of people feel much less alone regarding their feelings. You are also informing the scientific and clinical communities that the liver disease associated with hepatitis B is not the only (or even major) impact of the condition, but there’s so much more that it affects.
I really don’t know how to solve this issue and don’t think that there’s an overriding rule to follow in all contexts.
Peer groups like AA would have been helpful but we’re not comfortable disclosing to non-hep B people I guess. And a dating site would be so helpful but again, it’s the stigma… Too bad…it wouldn’t have to be about sex but even walks in the park or holding someone in a warm embrace without feeling like a mutant would be a god send
