The personal story of the journey of a young adult with hepatitis B infection brings new insights into the challenges that can be encountered, and about the way that stigma can be a barrier to high quality care.
“As a young girl in East Africa, I was the primary caregiver to my mother who lived with HIV/AIDS. Years later, having gone through college and being more informed about HIV infection, I decided to get tested for HIV myself. I visited a healthcare facility and the nurse attending to me informed me that the HIV test was negative but I had Hepatitis B infection. Before I could ask what Hepatitis B was, she was asking me to contact all the men I have had sexual relationships with, to get tested. I told her that I had never had any sexual relationships neither had I a boyfriend at the time. She looked at me in disbelief and remarked that I will not get any help unless I tell the truth. I left confused and scared, and I could not talk to anyone else because I was embarrassed. I thought I was safe and free but here I was again, feeling like a failure. I was offered counselling which I reluctantly accepted, but I did not find it helpful as it was based on lies.
I became very angry, depressed and anxious, but eventually I did my own research and learnt that one can contract this virus in different ways, including from the mother during childbirth.
I became very angry, depressed and anxious, but eventually I did my own research and learnt that one can contract this virus in different ways, including from the mother during childbirth.
I sent all my siblings for testing and three of them came back positive. I then understood that there is a high chance that I got the infection from my mother when I was born, or shortly after.
The more I learnt, the more empowered I felt. Being more knowledgeable about Hepatitis B infection, I expected to be treated with dignity and respect by the medical professionals. However, I had further negative encounters. When I relocated, I had to register with a new doctor, and informed him that I was a chronic Hepatitis B carrier. His response shocked me. “We are used to seeing people like you with these incurable diseases,” he carelessly said. I have never understood what he meant by ‘people like me’ and I don’t even want to start assuming. During my pregnancy, midwifes and nurses learnt about my condition and their attitude immediately changed. Having said this, I have also had positive experiences where some healthcare professionals have treated me with dignity and respect. However, the negative experiences outweigh the good in my opinion.
I don’t feel like having Hepatitis B should be a life sentence. However, when the people you trust to understand your condition make incorrect assumptions or accusations, start tiptoeing around you, whispering, labelling your medical notes in your presence, you become isolated, rejected or stigmatized and can lose hope”.
Personal testimonies such as this are powerful witness to the distress and damage that stigma can cause to an individual with Hepatitis B infection. In order to break down barriers to diagnosis and treatment, and to enhance the quality of life for individuals with viral hepatitis infections, it is important to recognise the nature and impact of stigma in different settings. Across communities and populations, this can represent a substantial threat to interventions that aim to enhance diagnosis, treatment and prevention. Enhanced effort is needed to ensure accessible education is provided for patients, the public and healthcare workers, and to provide clinical services that offer accurate information, provide support, and enhance respect, dignity and autonomy.
The testimony represented here is anonymised but is published with the full consent of the author.
This paper was written by four authors, Lela Burbridgea, Jolynne Mokaya, Monique Andersson and Philippa C Matthews who is Wellcome Trust Clinical Research Fellow, Nuffield Department of Medicine, University of Oxford.
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Kenya.
- Stigma around Hepatitis B infection - 7th March 2018
