WUNRN
IMAGINING OURSELVES
A Global Generation of Women
International Museum of Women
PARAGUAY
Paraguay Young Woman's Story of
Leprosy - Pain, Blemishes, Stigma
In 1993 I began feeling pain and went to see a doctor. His
incorrect diagnosis lead me to take wrong medication for a year.
When I wasn't getting any better, I went to another doctor in Assunção, the capital, and he diagnosed me with leprosy.
I couldn't believe it. My mind couldn't grasp the enormity of his diagnosis. Nobody in my family had leprosy. I began researching the disease; I wanted to treat myself on my own. I didn't want anybody to know, especially my mother. At that time my mother's sister had died of a heart attack and my grief-stricken mother was in a lot of pain. I didn't want to add to her pain.
I consulted a doctor on my own. He gave me sufficient medicine to last me four months and then he left Concepcion. As I had no way of contacting him, I stopped taking medicine after the four months had passed.
A month later I began having strong reactions - fever and painful purple blemishes on my body. They increased and looked like burns. My mother insisted that I tell her what was wrong. Once again I hid the truth from her and told her that my stomach hurt.
When the reactions got incredibly strong and I could no longer stand the pain, my mother went with me to the doctor in Concepcion who referred me to Marcial, the coordinator of the leprosy program.
When I went to see Marcial, he gave me medication for the reactions. I begged him not to tell my mother. He agreed but told me that I would eventually have to tell her because there was no possible way I could continue lying. He counseled and helped me a lot.
Then blemishes spread all over my body. I couldn't touch myself; I was burning with fever. I told my mother that the sun was to blame. After three days it got worse and I went back to Marcial to ask for help. He advised me to tell my mother and ask her to take me to the Mennonite hospital where they can effectively treat people with leprosy. He accompanied me home and I told my mother but I didn't want my father or my sister to know.
My mother was a tremendous support. We went to the Mennonite hospital in Asunción. While in the hospital I improved a lot, but once I got back home, reactions returned and I had to return to the hospital.
The doctor told me that my reactions worsened every time I returned home because I wasn't at peace at home. This was true.
I was discriminated against because of my disease. Some neighbors suspected that I had leprosy because of the state of my skin and my body. My mother couldn't keep the secret and eventually told them. They were afraid and refused to let me near them fearing I would contaminate them. One neighbor still refuses to drink or eat anything that comes from my house.
People were afraid to come close even while I was at the health centre in Concepcion. Doctors and nurses were afraid of contracting the disease even though we know that leprosy is not very contagious. My family lived with me and never got it. Most professionals never get the disease.
I began applying for a job and left my resume in various places but nobody ever called. No company wanted to have an employee with visible scars. It made me realize how people chose employees based on appearance; they didn't look at people's characters or their skills.
When friends came to the house I used to hide in the bedroom. I even asked my father to put a timber fence around the house so that no one would see me when I was out in the yard. And even though it's been three years since I've had any blemishes or fevers, I still locked myself within myself and within my home. I lost a great part of my youth.
My older sister didn't find out until last year. Advised by Zilda and Solange from IDEA * who came to visit me in my home, I found the courage to tell her. She continues to be my sister just as before.
I began leaving the house to go out for a walk, to church and visit other people. I always used to wear long-sleeved blouses because people always inquired about the condition of my arms and legs. They kept staring at me and that bothered me. After Zilda's visit, I started talking freely and overcame my fears. And now, I'm back to wearing normal clothes.
My parents have always supported me. After my father found out, he insisted that I go back to living a normal life. He told me that I should and could be the same dynamic person I had been before. I have been truly blessed with a wonderful family.
I discontinued my studies a few years ago because I experienced too many reactions. I have serious eye problems because of the medication. At the moment my eyes are so bad, I can neither read nor write.
I want to complete my studies, get a degree in nursing and help people affected by leprosy. I experienced many embarrassing moments while at the hospital and I don't want anybody to go through that experience.
Since my father is the only working member of my family, we don't have very much money. We managed to pay for one eye operation. Now I have to cure my other eye and buy glasses. Zilda and Solange are helping me and trying to raise money for the surgery.
Today I feel like I have more dignity. I won't let anyone walk all over me. If a person is afraid of, or doesn't want to be close to me, I will leave quietly without feeling hurt or without losing my dignity. Now that I understand people who are afraid of me, I know why they are but I don't permit myself to be rejected by people.
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