Addressing stigma and cultural challenges
“You may feel like a zebra standing in a crowd of horses. You may feel people are looking at you differently.” Yong Hao Lim describes how the sensitive subject of stigma and cultural challenges can impact the lives of people with HAE, by making them feel like they stand out amongst others.
Yong Hao told the audience that although he would talk about stigma rationally, it is essential to understand that you mostly feel it as an emotional experience.
He explained how there are different types of stigma. The one we’re most familiar with comes from other people: how people look at us. This is a public or social stigma, where negative attitudes can become discrimination. HAE patients may feel this judgment of others in social situations.
Yong Hao described another type of stigma: internalized or self-stigma, based on the attitudes and beliefs that people with HAE and their caregivers carry about themselves. Research shows that this type of stigma can be the source of mental health issues, Yong Hao said. It shows up as fear and shame in the quality-of-life surveys conducted amongst people with HAE. A recent study showed that people in Japan reported that stigma was high, along with mental health issues such as anxiety and depression.
Yong Hao then described the complicated cultural considerations across the Asia-Pacific region. Yong Hao identified 6 points, focusing predominantly on Asian culture and attitudes.
Loss of face
Aligned with reputation, not just of the individual but of their family and extended family. A condition like HAE may affect an individual’s reputation, dissuading people from seeking help.
Traditional beliefs
Very broadly, this is how different cultures view things. The beliefs may manifest in a fatalistic way of looking at a health condition like HAE and prevent people from trying to improve their situation. Other beliefs could suggest HAE is bad luck, bad karma, or even the result of something your ancestors did. All this can lead to a person blaming themselves.
Traditional medicine
For some people, there is less reliance on science-based medicine and more belief in the value of traditional medicine, such as eating certain foods or using herbal preparations. Whatever the form, this can prevent people from accessing objectively proven effective treatment such as modern HAE medicines.
Paternalistic healthcare
Paternalism in healthcare describes a relationship where all power resides with healthcare professionals who make all the decisions for a patient. “Trusting in your healthcare professionals is vital,” said Yong Hao, “but there should be shared decision-making, in which the patient and the doctor have a meaningful conversation before making an informed decision.”
Collectivist values and interdependence
Yong Hao spoke about the idea of burden, as someone with a diagnosis can see themselves as imposing a burden on others, such as their family. In this view, everyone sees themselves as part of a larger social unit and decides if their diagnosis will negatively impact their friends and family.
Marital expectations
Finally, Yong Hao described cultural considerations related to marriage and children. There can be issues if people feel that a genetic condition like HAE will be passed onto children, and the effect that might have on the desire for a wider family line.
Im-Kyung Lee’s experience and advice
Im-Kyung Lee, from HAE South Korea, joined Yong Hao on stage to discuss her experience of cultural stigma and challenges.
For Im-Kyung Lee, South Korean society means some people may perceive HAE as a burden or view it negatively. As HAE is a genetic disease, there are concerns about people getting married and having children. Some people may wonder about the impact on future generations. All this means she feels burdened when explaining her condition, and resented HAE as it constantly meant explaining she had not brought the illness on herself. All this cultural stigma made her feel hesitant when meeting new people.
All this changed when she joined HAE Korea and learned more about the disease. She felt more confident in explaining that the disease is not something to be looked down upon: people with the condition can live their lives without constraints as there are effective treatments. Over time, people accepted her and her illness, treating her with empathy and understanding. Her current boyfriend is different from others who questioned her suitability for marriage. He tried to understand the disease and learned how to inject her in case of an emergency.
She strongly advised everyone present to join their country’s patient support group and connect with people with similar experiences. “This will be a great source of strength and support,” she counseled.
Finally, she encouraged everyone to have a positive mindset, as it is not helpful to be frustrated or negative. Continuing to learn and understand means you will have more confidence in your own health. “HAE is simply part of our lives; have faith you can live a normal life like everyone else,” Im-Kyung Lee concluded.
How to address stigma and cultural considerations
Yong Hao described ways in which people can address the issues that stigma can cause, and how cultural notions may prevent people from pursuing the best outcomes for their HAE.
He started by suggesting that it is important to collaborate with health experts, whether traditional or modern medicine, religious experts, and other cultural leaders. Working with these individuals will communicate a sensitive message about the disease and its appropriate treatment, which can be powerful in the relevant communities.
In terms of stigma, Yong Hao reiterated the importance of knowledge. Joining a patient group will provide peer and community support and opportunities to educate yourself. All these activities can reduce self-blame and stigma and empower people to seek the treatment they need to improve their lives.
Im-Kyung Lee from HAE South Korea and Yong Hao Lim from HAEi talked about how stigma and cultural challenges can impact the lives of people with HAE.