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Table 3 Case studies highlighting intersectional experiences of multiple adversities including health-related stigma

From: Intersectionality and health-related stigma: insights from experiences of people living with stigmatized health conditions in Indonesia

Case study 1:
HIV, sexuality, comorbidity, poverty & religion
Case study 2:
Leprosy, disability, poverty & religious faith
Case study 3:
Schizophrenia, poverty, sexuality & religion
Case study 4:
Diabetes, comorbidity, gender, poverty & religion
Fadia is 44 years old and lives in Jakarta. He identifies as a gay man and has been living with HIV for 6 years. He describes how poverty forced him into working as an exotic dancer and occasionally as a sex worker to make ends meet. He also got addicted to using shabu (methamphetamine). He knew of his HIV status in the prison when he was incarcerated for engaging in sex work. He talks about how being a gay sex worker with history of drug use and having HIV subjected him to harsh judgment and treatment from people in the community and healthcare providers. He talks about how health staffs stigmatized and discriminated against him particularly for being gay with HIV. He talks about one particular incident where he fell very sick but the hospital officials claimed he couldn’t be hospitalized “They said I couldn’t stay there because they were afraid the disease could spread easily to other patients. They did not know well. They feared HIV, but also homosexuality”. Further, being Muslim even worsened the stigma he felt because of his health condition. He talks of how his religious affiliation added on to the experience of stigma of HIV: “In my religion, there is still antipathy [towards people with HIV]. It is even worse when you are gay. Religion is hard to be mixed with the health issue and even harder when it comes to your sexuality [being gay]”. Alia is 42 years old and hails from Cirebon. He has been living with leprosy-related disability for the past 8 years. He talks about how he used to work in Jakarta as a street vendor when he started getting blisters and wounds on his skin, which was later confirmed as leprosy. He was “too ashamed” to seek treatment at first. However, by the time he sought treatment - it was too late and he got impairment on his feet and hands. He talks about how the public perception of leprosy being infectious was even more intensified when people saw his impairment. He says: “people with leprosy are ostracized and excluded in my society. So, the stigma is high. But for those who have impairment like I do, life is just impossible”. He recounts his experience of how people would avoid him and say “do not touch him”. He describes how even healthcare providers showed disgust towards his impairment and avoided physical contact. Further, being poor worsened his experience of stigma in the community. He talks about how being poor affected his self-reliance and confidence. He says: “I wanted to rise up – but I could not because of my economic condition”. Luckily, his faith in god led him to accept his disease, and in conjunction with continued treatment - he gained back his confidence and was able to overcome and dismiss the rejection and judgment from others. Fauzana is a 37-year-old man from East Jakarta. He identifies as a gay man and belongs to a poor devout Muslim family. He was diagnosed with schizophrenia in 2005. After being diagnosed, his family thought his mental illness was because of his “sin” and instead of seeking medical care, forced him to repent and remember Allah. Eventually after all attempts failed, he was sent to a mental asylum which almost bankrupted his family. He recounts how poverty worsened the stigma of his mental illness: “The hardest thing in my life was my financial condition. My family was in deep debt. I did not have money to buy medicines. I did not have money to eat. I was afraid of losing my life. I was always worried about how I was going to survive”. Further, the stigma of being gay even made his experience worse, which left him feeling a deep shame, sorrow, and loneliness. He says “I experienced a lot of stigma because of my health condition, but being gay made it even unbearable. I lost all hope. I felt very lonely”. However, he talks about how he was able overcome his adversities by having faith in god and focusing on his treatment, which made him accept himself and feel better. He says: “I never lost my faith in god. I did not forget to pray. Besides that, the most important thing that helped were the medications. I had a holistic recovery – with faith, medicine, and self-acceptance”. Catherinea is 52 years old and lives in West Jakarta. She says she has always been obese and when she first found out that she had diabetes 10 years back - she broke down. The added stigma of diabetes with the already existing stigma of obesity took a toll on her. She says “I cried when I knew about it. What am I supposed to do when my body is as big as this?”. Further, when doctors prescribed her insulin injections because of her comorbidity, it made her feel even worse. She says she thought she had a “nasty disease” and felt disgusted with herself. She also talked about how the society judged her harshly because she is a woman and blamed her for being “lazy” and making “bad dietary choices”. Further, she talked about how diabetes affected both her and her husband’s sexual libido. With both she and her husband living with diabetes, she talks about how their economic condition affects their life with diabetes: “Diabetes makes us dependent on medicine, and some treatments need a great amount of money. The rich will have more options, while we just have to accept whatever we can afford”. Despite the hardships, she highlights the importance of having faith in god: “My life is in God’s hand. God pays attention to the most trivial things. Be grateful and accept it. Once you accept it, it will be better. It will set you free”.
  1. a The names of the case study participants have been changed