Amanda’s story: “Hepatitis B needs to be talked about and normalised. Otherwise, how will the perception of it ever change?”

In the two years since being diagnosed with hepatitis B,  Amanda has gone from wanting to hide away in a cave to 'being able to talk for England' about it in her desire to help others in a similar situation and raise awareness. Thank you for sharing your story with us, Amanda. 

I’d never heard of hepatitis B until I was diagnosed and it was a really, really dark time for me. What worries me is that so many other people are stuck in that darkness too.

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I’m 65 and an ex-teacher. I was diagnosed with Crohn’s Disease in the autumn of 2019 and had extensive blood tests so doctors could decide which medication to put me on. I don’t think I’d had any symptoms before then apart from occasional pain on and off over the years, which I suppose could possibly have been my liver. I kept going back to the doctors and they did a scan of my gallbladder, but it was fine so they didn’t investigate any further. It had stopped before the Crohn’s diagnosis.

Three or four days before Christmas 2019 I received a phone call from a hepatology nurse who told me the Crohn’s blood tests had flagged up that I had hepatitis B. I thought it was something to do with dirty water, but every single search engine came up with drug addicts and unprotected sex, so I kept thinking it must be a mistake. Christmas was ruined and I cried the whole time.  I also thought why not wait to tell me until after Christmas, as Christmas was ruined for all the family. I understand now why it was important to tell me as soon as possible, what would have happened if I didn’t know and had cut myself cooking and someone had helped bandage me up and I passed it on. It doesn’t bear thinking about. It would also have been unethical to withhold the knowledge.

I had my first hepatology appointment in the first week in January and was expecting to go in and be told they’d got the diagnosis wrong, but of course they hadn’t. The nurse I saw was lovely and I feel lucky to be in the care of such a good team. We went through my records to see if I had been tested for it when I had my two children and when I could have got it. I think it was probably through a cut I received some years ago.

Hepatitis B could have done a lot of damage to my liver

I was told I would have a fibroscan and an ultrasound scan. The results came back as normal. Doctors changed the medication they were going to put me on for my Crohn’s because it could have had an adverse effect on my liver and I was also put on antiviral medication to reduce the hepatitis B viral load.

Every scan I’ve had since had has been in normal range and the medication is keeping the virus level down to undetectable. I thank God that I was diagnosed with Crohn’s because through that I discovered my hep B. I feel so lucky and privileged that the tablets are working, because the hep B could have done a lot of damage to my liver. I shudder to think that I could have gone through life without knowing it.

When I was first diagnosed I felt full of shame. I did tell some people – I ran a type of food bank and felt obliged to tell the volunteers. I also told some very close friends I thought I could trust. I was terrified of anyone else finding out and looking it up on the internet and thinking “Ooh, what’s she been doing?”.

I didn’t go to the dentist for two years after I was diagnosed, partly because of Covid, but also because I didn’t want to fill in that medical form. It was bad enough putting Crohn’s on it without hep B as well. He’d been my dentist for donkey’s years – what would he think! but in the end I had to go and he was fine.

There was one person I feared speaking to about it, but one day I decided to be brave because if I could tell them I can tell anyone. It felt very empowering. They used to work in a hospital and they said: “Oh, that’s nothing. Loads of people come into hospital with hepatitis B!”

I’ve now accepted the diagnosis and am determined to shine a light on it. It was a gradual process – I thought do I stay here in my cave for the rest of my life, or do I do something about it that will help others? That drove me more than anything. Most people I tell say “I’m terribly sorry, poor you” so I’m not getting the stigma that I thought I would. I used to think that everyone I told went home and Googled it – they’re not because they’ve got too many other things to worry about and within a couple of minutes they have forgotten about me anyway.

Of course there is stigma out there and that needs to be challenged, if it is not it will persist but my personal experience is that most people are too busy with their own lives. I would say to anyone who does stigmatise me that no one has any right to judge other people, it can happen to anyone and you’re very, very lucky that it’s not you. The best way to challenge stigma is through education – so many myths exist out there.

I didn't know I had hepatitis B and was symptom free

Hepatitis B can affect anyone and more than anything I want people to get tested. If I didn’t know I had it and was symptom free, how many more people are out there as a walking time bomb? I would also tell people not to self-stigmatise and to talk about it. It is therapy, in a way, and very empowering.

If anyone had told me that within two years I would be telling my story, I would never have believed them, but at 65 I just don’t care what anyone thinks anymore. I’m also a Christian and part of me thinks God has put me in this situation to make a difference. There are so many people who are pushed to the edge of society and I’ve always felt my calling was to help them.

I have been so lucky to have a husband and children who have loved and supported me every step of the way and cheer me on from the sidelines.

Because of my Crohn’s and Hep B I’m doubly vulnerable for Covid so I don’t really go out very much as I am immunosuppressed. I do find that there is stigma in this. People do not understand that I have to be so careful when mixing with others, there is little understanding or empathy and I often feel that people assume that I don’t mix because I am being awkward.

I joined the British Liver Trust’s online hep B support group

Having Hep B is so lonely and I had no idea of how many other people have it. I wanted to reach out to other people like me so I joined the British Liver Trust’s online hep B support group. It’s nice to talk to other people with it.

We have a monthly meeting and Kenny, who runs the group, will tell us about anything new in the pipeline and suddenly there are so many exciting developments on the way for a condition that has so often been overlooked, nationally and worldwide. It’s good to talk to other people in the same situation, you feel like you’re not the only one in the world with hep B and somebody else understands. I think this support group was instrumental in moving my life on and to tell my story.

I’m desperate to make a difference in any way I can and can talk for England on hepatitis B, I’m just so passionate about it. I’ve become a member of the Community Advisory Board of the Hepatitis B Foundation which is a huge worldwide organization based in America. I’m a representative for Europe. Patients across the world input the patient’s perspective with pharmaceutical companies to help design clinical drugs trials.

Through Kenny I’ve also contributed my experience to an article about stigma in a scientific journal and will also be part of a webinar for the British Liver Trust which will be going out on March 9th (2023) I’ve also told my story as a patient advocate in a webinar for the Crick Institute.

Anything I can do to help people with hep B, I’ll grab with both hands because I just want to be that light that shines on it. I believe we all need to share our stories and the more I talk about it the more I feel it needs to be talked about and normalised. Otherwise, how will the perception of it ever change?

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