Leprosy can affect people physically, but it can also destroy their psychological and social health. This damage is a result of stigma—the disgrace that people experience as a result of having leprosy.
Stigma happens when people put certain differences into a negative category, separating the person with those differences from everyone else. It results in those people experiencing discrimination. Stigma is a common and devastating phenomenon. It can affect people with other health conditions too, like Buruli ulcer, HIV/AIDS or Diabetes. Because stigma is such a complex aspect of leprosy and can occur after its diagnosis, under-trained health workers can overlook it, as Gowou’s story might suggest.
There are many complex factors that cause stigma. Some important factors include a fear of the disease and the cultural and religious beliefs of its cause.
It’s not hard to understand why people have entrenched fears of leprosy. In the past, leprosy was untreatable, resulting in segregation and complications that could be fatal. Although these things are not applicable to us today, they still affect how cultures respond to the people who have it. Leprosy shouldn’t be feared. It’s not highly contagious and it can be treated.
Historically, many people of faith have interpreted leprosy as being a punishment from God. The massive involvement of Christian missionaries has also given leprosy complicated religious meaning. In Australian churches and synagogues, leprosy is often used as a metaphor for sin, but this comes at a great cost to people affected by leprosy.
In some cultures, it’s thought that one gets leprosy as a result of witchcraft—either as a victim of magic or as someone who bewitches others. In other cultures, it’s medically mistaken and people believe leprosy is sexually transmitted. Although these mistaken beliefs vary across cultures and have changed over time, they are all deeply negative and they usually imply that the person has brought it upon themselves. People don’t bring leprosy upon themselves. They contract leprosy from bacteria, not any form of magic or sin.
Stigma can cause a lot of problems for people affected by leprosy. To prevent discrimination, people often conceal their leprosy by not seeking medical help. This can result in permanent disability and deformities, which in turn worsens the stigma. It’s a tragic cycle.
Even when people affected by leprosy are successfully cured, the stigma can remain an obstacle to resuming regular life. They may be unable to reintegrate into their families, jobs and wider communities. We’ve met countless people affected by leprosy who believe leprosy directly caused their divorce. In one study in Nepal, a third of leprosy patients were abandoned by their spouses. Addressing stigma is an integral part of tackling leprosy.
“I used to be rejected in my village. Now I’m accepted and people come and sit and chat with me”—Chamaru from Nepal
We can’t simply cure stigma. But we can respond in powerful ways. On the field, interventions have to be tailored to the condition, society and individuals involved. Here in Australia there are three simple ways you can help:
Stigma often relies on misinformation and mistaken beliefs. Many Australians don’t realise that leprosy still exists. You can help them understand leprosy as you talk with your own family, friends and colleagues. Share something on Facebook or Twitter. Stay updated on leprosy matters. You’re already doing this by reading this article. There are further resources available on the KIT Blog.
Encourage your friends and family to recognise their role in tackling leprosy. Challenge the metaphors and language used in your faith group. Words like “leper” that are still used in some older translations of the Bible degrade people affected by leprosy. Using a better expression like “people affected by leprosy” recognises our shared humanity under God and helps change cultural attitudes. You could also host a morning or afternoon tea with friends to help raise awareness.
People affected by leprosy need support as they cope with the disease. When Jesus cured a man affected by leprosyhe didn’t just banish the disease with his words (as he did with nearly every other recorded healing). He touched him, defied the culture of their religion, and restored his self-worth. This was probably the first physical contact this man had in years. Similarily, counselling helps people affected by leprosy reconnect, avoid self-stigmatisation and confront discrimination with confidence and dignity. You can give this to someone.