How have you dealt with discrimination because of your HBV status?

Hi all,

Use this thread to discuss how your HBV status has affected your life. Feel free to share stories about:

  • Any discrimination or stigma that you experienced because of your HBV status
  • What impacts it has had on your life
  • Most importantly, how you dealt with the discrimination

The only way I’ve chosen to deal with it is to remain private and silent about it. It’s rather ridiculous thinking about it but I rather do that then deal with any potential stigma. The first time I opened up about it to those outside my family circle was to a very inspiring teacher (but only after I had left the school) and to my partner prior to being intimate. I have to admit both times I was ridiculously nervous and actually broke down in tears telling my partner from the anxiety of sharing something that might scare him off. Luckily we’re now married :slight_smile:

5 Likes

Thanks for sharing these experiences, Melodia.

What you describe is so common from what I’ve seen! We even wrote about it in a recent review here. It also includes my story about talking about my Hep B infection to my now-wife.

I’m really glad you’ve found family, friends and a partner who understands. :slight_smile:

TT

4 Likes

I am from Nigeria where stigmatisation is rife if you disclosed your health status.

I have basically been quiet about it even though it was difficult because family and friends kept asking me about my husband illness. We haven’t the courage to tell anyone and we also felt our children are too young to handle the Hep B status of my husband (our kids are 13 and 15). The silent is killing though; you have no one to share your thoughts with for fear of stigma and discrimination!

We have scheduled our kids for the recommended 3 panel test next Saturday without telling them they are been tested for HEP B. Hopefully they will all be fine (negative).

6 Likes

I really wish all the best for your children and it sounds like you have done your best for them no matter the outcome.

It is good that you and your husband can talk to each other about this experience, even if you don’t feel like you can disclose it to others. I also hope this community helps even just a little bit as a way to express your feelings and get some support through this understandably difficult time for you.

TT

2 Likes

I agree it’s much easier that I found out about having HBV after being married! I didn’t have to worry about how to tell future partners. Ironically, my husband is a virologist (researches viruses) so when I first found out, he was just as devastated as I was since he lectured medical students about HBV and the serious outcomes. Anyhow, I was suspended from my nursing job when the hospital found out, and my baby was kicked out of daycare until the hospital figured out what to do with me! Really painful time. But since then, I never really faced discrimination because I never told people about my HBV until I retired in 2017. But for 30 years, I had this HUGE secret, and like Melodia, if I did tell someone I had HBV, I would end up crying because of the pent-up anxiety. Once I retired, I “came out” publicly and felt so much relief, and received such positive affirmation, that I regretted having lived with this SECRET for so long! But I realize that young people looking for life mates, jobs and social opportunities for themselves and their kids have a lot at stake in telling others. It is something to navigate carefully. Even though HBV is now a protected condition in the U.S. under the Americans with Disabilities Act (ADA law), it doesn’t mean discrimination won’t occur.

5 Likes

Stigma and discrimination is such a big problem. At the Hepatitis B Foundation, we hear from so many people in Nigeria who face job loss due to hepatitis B. We are trying to start campaigns throughout the world where people with hepatitis B join together to share their stories and force governments to put protections into place to end discrimination. But it will take time! Thank you for sharing your experiences here.

4 Likes

I think there is also a sort of shame, maybe embarrassment also. If it was like diabetes or something one maybe could be open about it. Having hep b as STD or STI, makes it sound its “dirty”.

When you fill out a job application, they do ask you if you have any medical conditions. They list various of conditions but not hepatitis b specifically.

I wouldn’t dare tell anybody at my work. I m sure people with HIV is in the same boat as us, CHB. Sometimes even at the doctors, I feel the doctor office employee are like “hep b…gross”. But it’s all in my head. I was watching family guy the other day, and they had a skit on hepatitis. I was like … ehhh that’s the way the public feels about hepatitis. It’s gross. BTW, love watching family guy.

But bottom line is no amount of discrimination can top the fear of getting HCC or cirrhosis or any liver failure from hepatitis b mind games within. It’s just another straw to the camels back.

I found out after I got married and had kids. I sometimes think my wife would not have married me let alone dated me if I knew or she knew about my hepatitis b.

3 Likes

Ha, ha … I will have to try and watch family guy. Why did they include hepatitis on their show? I’ve only seen HBV mentioned on medical shows and it’s always someone who uses drugs or engages in other risky behaviors. They never feature someone like me who is 61 years, a nurse, and never even did drugs let alone smoked! I am also always frustrated when people asked me, “which is worse, hepatitis B or hepatitis C?” when I talk about the Hepatitis B Foundation. People are confused and make the viruses competitive! There’s so much public education to be done to de-stigmatize the disease.

3 Likes

Anybody have life insurance? Have you been denied or get approved at a higher rate for life insurance.

I applied just to see how the rates were and without hepatitis B, I was quoted $30 some dollars for $250k for a 20 year term. With hepatitis B condition, I was rejected by 3 companies, and one company after 2 months, came approved at $98 a month for same term.

Not really discrimination but it’s just a reality check that 3 companies were not willing take on my life insurance which has a 20 year term.

Any experiences anybody is willing to share.

1 Like

Hi Neptune, not sure if you’re living in the US or not? I just went through a life insurance application process with my husband two years ago in relation to long-term care insurance (I’m 61 years). To my absolute surprise, I qualified!! My premium was a couple hundred dollars more a year because of my HBV, but at least I wasn’t turned down. The rates that you’re getting seem really good to me. The fact that you found companies willing to cover you is amazing progress. It’s not perfect, but when I tried 30 years ago, there were no companies. Clearly you’re a lot younger than me since my premium was in the thousands!! But hopefully there are other people on this forum who could share their experiences as well. Thanks for raising this important question, which I know has kept some folks in jobs they hate because they want life insurance to protect their families.

1 Like

Hello Joan. Couple more hundred a year is not bad at all. Compare to me not having hep b, the monthly payment is triple the cost. So for a 20 year term, it’s $6000 Usd vs $20,000 usd, for the same policy.

I live in the US. My work gives me company paid life insurance for$94k, but I was denied any additional coverage. And probably won’t be with the company for the next 20+ years. But never know.

I m 44, so I asked about a 30 year plan@$250k and was quoted $125 a month. I m not going to 30 years, but don’t want to check out before 65 either. I guess if I invest 40,50,+ a month for next 30 years I ll make up some of the difference… I don’t know.

Just eye opening and sucks the some insurance company think I m a risk before I m 65. If I make it to my 70s or even pass 65, I guess I beaten the odds for people with my condition according to the insurance standards

2 Likes

Hi everybody,
I am Wale from Nigeria. I have lived with hbv for 12 years. I initially contemplated suicide. I am however glad I did not. Hbv carriers are highly stigmatised in Nigeria. Due to this, I was unemployed for years after graduation from the university. I later got a job and now I desire to study abroad. But I am afraid I may be stigmatised and discriminated against as is the case here in Nigeria. Do I stand a chance of fulfilling my academic goals? Nice to meet you all.
Thank you.

4 Likes

Hello Wale, I’m here in Oyo state, Nigeria and facing the same problem. Is there anyhow we can connect? I want you to share about your experiences on about the diseases and treatment. We both know the situation of Nigeria health system. I was diagnosed positive November 24 , I’m going for my liver function test today. I’m not on any treatment yet

1 Like

I was placed on Lamivudine tablets with the hope that it will clear the viral load. I used it for two years but it didnt achieve the desired aim. All I do now is eat healthy and rest.

1 Like

Hi Wale and Sirbay, just realized that I responded to Sirbay before reading this post. Sirbay had sent lab results but I didn’t know if they were ordered as part of a hep b evaluation. Well now I know. So, I can say that stigma/discrimination against those with hep b can unfortunately be found everywhere. But countries like the U.S. do have laws protecting those people (which includes me - I was diagnosed more than 30 years ago) and it’s not impossible find to find jobs even with a hep b diagnosis. So Wale, please know that you should not give up your academic dreams!! You should apply for studies in the US, Europe or Australia where discrimination would not be an issue. Currently, the U.S. doesn’t require testing for hep B to apply for a visa. They may ask for vaccination records, though, but not sure. Anyhow, neither of you should give up hope! And it’s wonderful that you found each other. There is always strength in numbers, and hopefully you can provide each other support while living in Nigeria. Thank you for sharing your situations and please keep us all in the loop. Always, Joan

1 Like

Hello wale and sirbay…you are not alone I’m from Nigeria too and have issues getting job …it’s so terrible how hbv Patients are being stigmatized in Nigeria…I really cannot wait to travel as well but fear is what if that’s how it is all over the world

I’m so sad

2 Likes

Hi Joann

What about Canada

Do you think there will be discrimination there

1 Like

How I wish to travel out of this country but the funds is the problem but I keep trusting God

1 Like

Hi Sirbay and Wale,

I am a professor in a US medical school and director of our PhD program in molecular microbiology and immunology. There are no HBV testing requirements for entry into a US graduate school, and in fact, I am specifically forbidden by US equal education opportunity regulations from asking about HBV status during student recruitment. The university will require an HBV test once you arrive at school, but this is just to inform you of a health risk to you in case you are unaware, and to find out whether to offer you free HBV vaccination or not. The results of the test would not be shared with me, your mentor, or anyone in the graduate program. My senior scientist is from India and holds dual US/India citizenship. He cannot remember any HBV test requirements when he entered Canada or when he applied for Canadian citizenship. In short, your application for further education in the US and Canada will be judged on your academic qualifications, not your HBV status.

John Tavis, PhD

2 Likes