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First published on Hepatitis Australia's website in September 2019.
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.
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 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.
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.
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:
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:
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.
First published in Bipolar Life's newsletter on 17th September 2019
Why should we care about stigma?
Stigma affects many people in society, from race and gender inequality through to people living with mental health problems like bipolar disorder. It is a huge issue with myriad consequences, not least that individuals may experience knock-on effects of stigma that can even outweigh those of the mental health disorder itself. By extension, family and friends may also experience stigma, also known as ‘courtesy’ or ‘association stigma’.
How might an individual be affected by stigma?
An individual experiencing stigma may form negative attitudes and behaviours about him or herself (self-stigma), and may:
Isn’t stigma decreasing?
Despite the globally large number of public campaigns, high school education and media coverage about mental health, one might think that stigma would be less prevalent. However, according to the General Social Survey which collects data about U.S. residents, the public is in fact more stigmatising – despite increased knowledge about mental illness – than back in the 1950s.
The reasons for this surprising worsening of public opinion include:
What is stigma?
Ostracisation of members of society has existed as far back in history as ancient Greece. For example, in Athens, traitors and slaves were physically branded with ‘the mark of shame’ – ‘stigma’ in Greek.
Nowadays stigma is less visible, but most affected are those with mental illness, the homeless, and substance abusers. In one study, it was found that although people with bipolar disorders 1 and 2 experienced the same personal experience of stigma as those with unipolar depression, the impact (in terms of quality of life, social and familial relations and self-esteem) was much worse in people with bipolar disorder.
Stigma can include one or more of the following:
A survey by the Royal College of Psychiatrists in the U.K. looked at public perception of people with severe depression. The most commonly held beliefs were that these people:
Dr Kay Redfield Jamison, Professor of Psychiatry and Behavioral Sciences at Johns Hopkins University School of Medicine, U.S.A. is well known for her work on bipolar disorder as well as her autobiographical account of her own experience of the condition. She states that these study figures are even higher when applied to people with bipolar disorder.
It is possible bipolar disorder may appear unpredictable due to its sometimes-fluctuating nature, depending on whether the individual is relatively well and getting treatment and support, or experiencing a period of depression, mania or mixed state.
A little more about self-stigma
It is not uncommon for an individual with bipolar disorder to experience negative beliefs about him or herself, which may reduce self-esteem and self-confidence. Worse still, this state of mind may lead to avoidant behaviours like not pursuing opportunities, or not challenging negative self-beliefs by gathering evidence to the contrary.
Even within the medical profession there is stigma from, and towards, other healthcare providers. Compassion without sufficient knowledge may be a contributing factor in some cases.
Dr. Jamison offers an interesting observation that the ‘silently successful’ get well because they have sought and received good care, yet they remain silent for fear of personal or professional reprisal. This in turn perpetuates the public’s misconception that the mentally ill don’t get better.
Where to from here?
Fortunately, clinicians and researchers in many countries are increasingly aware of the rise of stigma and driving ongoing important work in this field. Though there is no one simple solution, here are some helpful, evidence-based suggestions for moving forward.
A Canadian study recommended six approaches to stigma reduction:
Individuals, friends and family
On an individual level, it should be noted that self-stigma can manifest and be managed in different ways. In CREST.BD's Stigma123 Webinar, Natasha Kolida, a student and researcher with bipolar disorder, encourages education as well as being holistic and self-compassionate in one’s journey. More about CREST.BD in a moment.
Dr. Jamison advises:
In 2014 Dr. Roumen Milev, Professor of Psychiatry and Psychology at Queen’s University, Canada ran a CREST.BD webinar about overcoming stigma in bipolar disorder. In this presentation, he describes a fascinating community-based recovery-orientated course provided to 8-10 participants with mood and anxiety disorders. Comprising seven closed two-hour sessions, content included education about stigma (covering self-stigma, family, friends and medical settings; education, housing and the workplace); some sessions taking the form of group workshops with brainstorming and role play.
Perhaps this is the sort of course we could make widely available in Australia to complement our current inpatient and community programmes for those with bipolar disorder.
Who is CREST.BD?
CREST.BD describes itself as “The Collaborative RESearch Team that studies psychosocial issues in Bipolar Disorder...CREST.BD is a multidisciplinary collaborative network of researchers, healthcare providers, people living with bipolar disorder, their family members and supporters.” Bipolar Life’s patron, Professor Greg Murray, is Deputy Lead and a key researcher with this inspiring international team.
CREST.BD’s website includes excellent resources and tools including videos on stigma, cognition, sleep, mood, physical health, home, self-esteem, leisure, relationships, spirituality, money, independence, identity, work and study for people with bipolar disorder.
Media and beyond
Finally, looking at how we can make a difference on a larger scale, StigmaWatch is a constructive program run by national mental health charity, SANE Australia. Its aim is to promote responsible reporting of mental illness and suicide in Australian media and is supported by Mindframe, an Australian Government initiative. This is a great example of protest being used as a tool to improve public perception of mental illness. SANE encourages anyone to report to StigmaWatch if they see inaccurate or inappropriate terminology or reporting of mental illness or suicide.
SANE’s website states that “Mindframe has also developed resources for media professionals, journalism students, scriptwriters, police and courts, and conduct briefing sessions with media organisations to discuss issues relating to mental illness and suicide”.
With so much research and an increasingly evidence-based approach to combating stigma, individuals have more power than ever to influence how bipolar disorder is seen in society. In addition, the many tools available can greatly assist an individual to reduce self-stigma and embrace life more fully.
YouTube. 2019. Discrimination and Stigma Against Patients with Depression and Bipolar Disorder. Johns Hopkins Medicine. [ONLINE] Available at: https://www.youtube.com/watch?v=9Hc0NF89ryg. [Accessed 17 September 2019].
YouTube. 2019. Bipolar Disorder Stigma, Suicide & Families. CRESTBD. [ONLINE] Available at: https://www.youtube.com/watch?v=_eE8YSSo-tA&t=1582s. [Accessed 17 September 2019].
YouTube. 2019. Overcoming Stigma in Bipolar Disorder: Challenges and Opportunities. CRESTBD. [ONLINE] Available at: https://www.youtube.com/watch?v=yDJ4DSZ0Id0&t=2258s. [Accessed 17 September 2019].
YouTube. 2019. CREST.BD's Stigma123 Webinar Jan2016. CRESTBD. [ONLINE] Available at: https://www.youtube.com/watch?time_continue=234&v=LKkpvPD903Y. [Accessed 17 September 2019].
Goodwin, J., 2014. The Horror of Stigma: Psychosis and Mental Health Care Environments in Twenty‐First‐Century Horror Film (Part II). Perspectives in Psychiatric Care, [Online]. 50/4, 224-234. Available at: https://onlinelibrary.wiley.com/doi/abs/10.1111/ppc.12044 [Accessed 17 September 2019].
Arboleda-Flórez, J., 2012. From sin to science: fighting the stigmatization of mental illnesses.. Canadian Journal of Psychiatry, [Online]. 57(8):, 457-63. Available at: https://www.ncbi.nlm.nih.gov/pubmed/22854027 [Accessed 17 September 2019].
CREST.BD. 2019. New directions in bipolar disorder research, treatment and care. [ONLINE] Available at: http://www.crestbd.ca/. [Accessed 17 September 2019].
SANE. 2019. StigmaWatch. [ONLINE] Available at: https://www.sane.org/services/stigmawatch. [Accessed 17 September 2019].
Dr Alice Lam
I'm a doctor who is passionate about writing quality health content.