I was born on January 4, 1970, in Jenggawah Village, Jember Regency in East Java to M Sholeh and Dewi Suparti. I am the youngest of four siblings. My father was a farmer and my mother took care of the household. I graduated from the equivalent of junior high school in 1986. Due to the economic limitations of my parents, I could not continue my higher education and worked odd jobs as a farm laborer to help my parents.

In 1991, I married a girl from the next village and now I have been blessed with three children—two girls and one boy. In 1997, I was accepted to work in one of PTP Perkebunan 27 in the tobacco sector as a representative of the field staff. And from 1999, I was trusted as a field staff in the company with 150 workers until 2004.

I was still working when reddish spots appeared on my right arm and cheek. Thinking this was a normal skin disease, I first treated the spots with skin medicine but they didn’t heal. Then, I asked my brother and he suggested I get checked at the puskemas (health center).

The next day, I went to the health center to check the spots on my arms and cheeks. After being examined, I was diagnosed with leprosy. It was in mid-2004.

I was shocked as if I’d been struck by lightning and couldn’t believe that I had leprosy and my heart was broken. It seemed like there was no hope to live. Because leprosy was very feared in the community, I thought my family would move away from me. I wondered why I had got leprosy while no one from my family or my wife’s family had it. “WHY ME !!!!” I was afraid, but at the same time I was angry and confused. What would I do if relatives or neighbors knew that I had leprosy? Leprosy was still a scourge in society and much feared by many people. Many of them said that leprosy was a hereditary disease, an infectious disease and there was no cure for it.

During treatment, I worked at the company while hiding my illness until one day my skin turned black due to the effects of MDT and my health began to get worse. Finally, I went to my boss and told him frankly that I was taking MDT to treat leprosy. My boss dismissed me on the spot. I was fired without any severance pay and came home with a broken heart. I thought how unreal this form of discrimination was; I was unilaterally fired from the company and shunned by my colleagues.

During treatment, I did not work and just stayed at home. My wife made a daily living as a casual laborer while taking care of me with all her heart. She gave me support every day to keep living life and take my medicine regularly.

After four months of treatment, I experienced a very severe reaction where my whole body swelled and my fingers started to bend. Every day was painful, and I could only lament the fate of my family. My family was shunned by neighbors and friends because of me.

People affected by leprosy have a strong self-stigma and experience a great deal of stress. In addition, the discrimination that persists in local communities is also a burden on their minds. Many of them stay away from daily interactions because they are ridiculed. For 12 months, I did not dare to go out of the house.

Day after day, I went through this suffering until I finished taking MDT for 12 months. Then I was declared cured by the leprosy officer at the health center. I am grateful that even though I have had leprosy, I have no defects in my body, thanks to early detection and taking medicine properly. There was a sense of pleasure in my heart, but also a sense of confusion. I had to find work for the sake of the continuity of family life, but the company no longer accepted me.

After some bad experiences,  I opened an electric welding workshop and a diesel repair shop business. With self-directed experience, I have pursued this profession until now and the income can support the needs of my family.

Initially, I was ashamed and afraid that the illness I had experienced would be known by people, but I ventured to attend a meeting to get together with other people who have experienced leprosy. We support each other and also provide education on how to take care of ourselves properly and provide therapy for those who have problems with crooked fingers. Meanwhile, in the community, people believe in me and place a lot of trust in me.

In 2009, I received an invitation from an organization, PerMaTa (Perhimpunan Mandiri Leprosy Indonesia), to attend a meeting in Surabaya. At first, I thought that the organization was a political party, and I was not interested. But after I read the vision and mission, I found that this was part of my life. I got interested and participated in the meeting. Since then, I have joined PerMaTa Indonesia and remain a member to this day.