Table 4 Selected comments reflecting participants’ understanding and experience of CHB-related self-stigma

Understanding of self-stigma

Participants’ definitions of “self-stigma”

• “Self-stigma is like, a classification that one has put upon himself. It’s not necessarily dictated by society, it’s internal and it’s how you feel about yourself. And a lot of times it’s probably a false perception, self-stigma. I mean, you may think everyone thinks I have the cooties and actually that could be in your mind, no one is judging you.” (US-14)

• “It’s the stigma that we place on ourselves. It’s the thoughts and the feelings and the emotions that we have related to something, a title or a feeling.” (US-09)

• “If I have a negative association about myself.” (DE-06)

• “Perhaps it’s what happened to myself when I stigmatized myself, meaning, I self-blamed, I [pause] self-punished, that’s what I mean.” (IT-05)

• “I feel ashamed about myself and avoid getting close to others because of my disease.” (CN-10)

• “It means you are embarrassed because of your illness. It feels that you are less than other people.” (CN-02)

Impact of self-stigma

Secrecy/concealment of diagnosis from all but trusted family or friends

• “…the reason I say it’s made me slightly self-conscious because it’s something that I’m not very comfortable with sharing with others and right there lets me know that it’s something I’m not proud of because of that reluctance to want to tell others that I have it. And, so, right there lets me know there’s an eternal internal reluctance or stigma that I have also placed on myself and not just society has placed it on me.” (US-14)

• “Yeah, I wouldn’t want to tell anybody because I feel like people will treat me different and treat me like I’m a walking virus that’s contagious, that will hurt them. I can’t handle that.“ (US-11)

• “I only talk about it to very few friends and I often withdrew from them.” (DE-01)

• “My colleagues don’t know, my neighbors don’t know. I was embarrassed.” (DE-09)

• “In daily life, there is no need to tell about my disease to distant relatives or friends you don’t normally interact with. I don’t want to give my wife’s relatives any worries, so I feel that I don’t have to tell them. However, if I was hospitalized for a long period of time, I wonder if I would have to tell them about the disease. It makes me anxious by telling people about my disease.” (JP-07)

Devaluation, self-blame, inferiority, worthlessness, shame, guilt

• “I think of that myself as not as good as other people…” (US-05)

• “I judge myself. Because of my free life. I blamed myself.” (DE-09)

• “Yes, feeling inferior, ‘dirty.’” (DE-04)

• “I thought I was different than others.” (DE-05)

• “I feel inferior to other people. I have ruined my life for not being careful. I blamed myself for it.” (IT-02)

• “I feel I’m not good enough compared to other people…” (CN-02)

• “I feel like a burden to my family. I’m rubbish, just like dust.” (CN-011)

Not taking opportunities

• “I’ve avoided some professions knowing that I wouldn’t want to deal with anyone knowing, such as like the medical field…And I think I remember in my early twenties reading that one story, it could have been just one in a thousand, but it definitely discouraged me from pursuing nurse practitioning, which is what I wanted to do for quite a while…” (US-12)

• “I deliberately avoided these companies that require a medical examination.” (CN-10)

Withdrawal, social isolation, marginalization, alienation

• “I was depressed and withdrew into myself, and hardly went outside, only to work, stayed at home, only saw my very closest friends, one or two people or my mother. But otherwise I kept very much to myself.” (DE-04)

• “At the beginning I couldn’t even imagine to kiss someone or get closer to someone. I withdrew and I was afraid. I didn’t want to infect other people.” (DE-09)

• “I try to avoid social situations even if somebody ask me to hang out at night. And if I don’t want to let others know my hepatitis B, it’s just like, I just haven’t been completely honest with others, I’m hiding something from them.” (CN-10)

• “When I have a choice of hanging out with my fellow students, I’d much rather be alone…” (CN-02)

• “People who aren’t familiar with the disease like to avoid me.” (CN-07)