Dealing with your hepatitis B diagnosis

27/9/2019

First published on Hepatitis Australia's website in September 2019.

Image by Waltteri Paulaharju from Pixabay

If you’ve just been diagnosed with hepatitis B, it might help to know you’re not alone.

In 2018 there were 226,612 people in Australia (257 million people worldwide) living with hepatitis B.

Emotional reactions

After being diagnosed with hepatitis, people can experience a range of reactions including shock and uncertainty, even if they had been expecting a positive test result.

It’s not uncommon to feel depressed, anxious, fearful, or worry about possible stigma. In addition, there may also be self-blame, guilt, or embarrassment.

Take your time working through difficult thoughts and emotions. Try to be patient and have self-compassion. Sometimes talking things through with your doctor or a counsellor can help.

Stigma

Stigma can arise in society or even within yourself. It can isolate you or interfere with you receiving treatment. For instance, a person may feel apprehensive about being seen attending an infectious diseases clinic if they are worried about what others might think.

A great way of reducing stigma is by learning more about hepatitis B. This will empower you to manage your condition together with your doctor, plus it’s helpful if you want to educate others.

The learning process

Be open to learning about hepatitis B at your own pace.

Feel free to explore the huge range of resources available such as via Hepatitis Australia. Information is available in other languages, audio/video formats including podcasts. There are also personal stories here and here about real people living with hepatitis B.

Support

Having the right support is invaluable. Who you share your diagnosis with is a very personal decision. No matter who your trusted person(s) is; you should reflect on the pros and cons of disclosure to each one.

You can also join a support group through your local hepatitis organisation or online forums like Hep Forums. Do keep in mind that forums may include people from other countries who have differing access to healthcare and medications, and that any health information should be discussed with your doctor.

Finally, these tips might be useful when you see your doctor.

Come prepared

Being prepared will help you get the most out of your appointment. Having a set of questions ready is a great way for you to get the information you need.

Don’t be afraid to ask questions

Here are some common questions others ask:

How did I get hepatitis B?
How do I make sure I don’t share it with others?
How will I know if I need treatment?
What will happen if I don’t agree to treatment?
What are the options for treatment?
What can I do to stay healthy and look after my liver?

Make notes for later

Research shows that people who are anxious or stressed are more likely to forget or incorrectly recall information later. So, it’s good to make notes during the appointment. Alternatively, ask your doctor for a written list of what you will both do after the appointment.

The right doctor for you

Because hepatitis B can be a lifelong condition, it’s ideal if you have a good and honest relationship with your doctor. Consider the following:

Do you feel comfortable talking to your doctor about your situation?
Does your doctor explain difficult terms, and answer your questions to your satisfaction?
Do they take time and not rush you?
Do they encourage you to take responsibility in your health management?

If you answered no to a few of these questions, then seeking a second opinion might be reasonable. If you need help to find a doctor with experience treating hepatitis B, you can call the National Hepatitis Infoline on 1800 437 222.

References

Hepatitis Australia. 2019. Hepatitis Statistics. [ONLINE] Available at: https://www.hepatitisaustralia.com/hepatitis-statistics. [Accessed 31 August 2019].
The Multicultural HIV and Hepatitis Service. N.D. Hepatitis B Statistics. [ONLINE] Available at: https://www.mhahs.org.au/index.php/en/media-page/statistics/hepatitis-b-statistics. [Accessed 31 August 2019].
Valizadeh, L., 2016. Psychological Reactions among Patients with Chronic Hepatitis B: a Qualitative Study. Journal of Caring Sciences, [Online]. 5(1), 57–66. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4794545/#R15[Accessed 31 August 2019].
Enescu, A., 2014. Psychosocial issues in patients with chronic hepatitis B and C. Current Health Sciences Journal, [Online]. 40(2), 93-6. Available at: https://www.ncbi.nlm.nih.gov/pubmed/25729588/[Accessed 31 August 2019].
Ng, C., 2013. Uncovering the experiences and needs of patients with chronic hepatitis B infection at diagnosis: a qualitative study. Asia-Pacific Journal of Public Health, [Online]. 25(1), 32-40. Available at: https://www.ncbi.nlm.nih.gov/pubmed/21807630[Accessed 31 August 2019].
Kessels, R., 2003. Patients' memory for medical information. Journal of The Royal Society of Medicine, [Online]. 96(5), 219–222. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC539473/[Accessed 31 August 2019].

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