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World AIDS Day 2014: HIV and me

I am a peer counselor, and I have been HIV-positive for 6 years. In a way, I don’t see it as a bad thing, because I have learned to live differently, to be more humane and to improve my self-esteem.

When I was first diagnosed, it was something raw in my life. I did not know what to do. Back then, two things crossed my mind: Who do I tell? and, What will become of me? Carlos, a friend who is also HIV-positive, helped lift my self-esteem. I grew to understand that my fight was not against HIV; my fight was and remains to change social norms that will allow me to be seen as a person, free from shame, enterprising, and who is entitled to fully enjoy the same rights as any Ecuadorian citizen.

My struggle has been hard. For a time, when I first started treatment, the supply of antiretroviral treatment ran out at my hospital. We were asked to go to the hospital every day for just one dose, since we were not given a one-month supply as we should have been given. I had just started treatment and was tired of going to the hospital every day for just one dose. I lost my job because I spent so much time standing in long lines at the hospital, despite waking up early. It was intense, since the hospital attends all persons who come in from the provinces, who even slept there in hopes of at least getting treatment for two weeks.

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At the time, I did not know what activism was. I met a few people, among them my colleagues who continue to be activists. I noticed they pressured the director of the hospital to respond to this shortage through the media. It was then that I decided to approach the media, and I began to demand that the government provide treatment. Although the media knew they could not take our pictures because of confidentiality issues, local press took my picture without my knowledge or consent. This news and my picture were printed in the press. I became concerned because my health was at risk.

My family did not know my status. An aunt found out through the article published in the local newspaper that I have HIV. She began to tell everyone that I had AIDS; my neighborhood would have found out if I had not stopped her. Currently, only a few people know my status: my mom, who found out from my aunt, a cousin who I told because she is like my sister, an uncle and my grandfather. These last two completely discriminated against me, distancing themselves from my family and my home, telling my aunt, cousin and mom to distance themselves from me because I would infect them.

Second Decade

When my mom found out that I had HIV, it was devastating for her. She felt defeated thinking that I was going to die, that I could infect everyone in the house, and that they had to get urgently tested to see if they had AIDS, too. At that moment I did not know what to do or how to defend myself, but I found comfort in my true friends who work with me in the organization. I spoke with them about it, a team of three people whom I now consider more than friends, my family.

Thankfully, they helped me resolve the problem before more people found out. They came to my house to speak with my mom about HIV. They shared everything they had gone through living with HIV, and told her I was not alone since I had their support. My mom felt very comforted and supported after meeting them, and she accepted that I have HIV. She hugged me, cried with me, and told me to move forward with my life and not think of the bad but the positive, that I could count on her in everything and that she would always be by my side.

Foto encuentro

Participants at the first national meeting organized by the HIV-positive Adolescent and Youth Network, September 2014. © UNICEF LACRO/2014/Metellus

When I first learned of my diagnosis, I started volunteering because I needed to do something more. I eventually ended up in an organization where I met people who had already been living with HIV for many years, who shared their experiences with me and supported me. I felt the need to learn more about HIV, and in that way share with others people who are diagnosed with HIV. I strengthened my abilities over a long period of time by offering peer counseling during orientations, supporting persons living with HIV, disseminating information about HIV and their rights. Eventually, I became a part of the organization’s leadership, which allows me to promote the quality of life of other youth like me to empower them, impacting each and every one of their lives.

However, there is still discrimination because job opportunities are few. I have spent years leaving my resume in different businesses, filling all the requirements and having all knowledge needed for jobs posted. But, most of my experience has been related to HIV, performing jobs such as health education, health promoter, and facilitation skills, among others, that are on my resume. Although I try to mask this information, I end up having to explain the diplomas that I’ve obtained to the interviewer. I am often asked everything, and that is when I find myself under fire when I am asked the million-dollar question: are you a carrier? Sometimes I deny it, sometimes I do not, since I want to get the job. However, they just stare at me like I am strange and tell me they will call me. I know that answer very well.

All I can say is that a person who lives with HIV is a person that has a special health condition. This is part of my reality. Many do not know what the virus is; only a person living with HIV can best explain what it is. When I speak with peers, there is a chemistry between us where the other person takes away something from me, and I also take away something from that person. This is an experience that no one can understand unless they come from this world. I will continue to always collaborate with others as a peer counselor, learning more from each person. I consider myself like any other person; HIV does not limit or contain me. On the contrary, it motivates me because a health condition should not be a reason to discriminate anyone. What would I be without……
Humor Intelligence Life

Hector* is a member of Ecuador’s HIV-positive Adolescents and Youth Network and helps other HIV-positive youth as a peer counselor with Grupo F.A.V.U., an HIV/AIDS organization in Ecuador that helps other persons living with HIV/AIDS manage their condition and improve their quality of life. He shared his story with UNICEF during the HIV-positive Adolescent and Youth Network’s first national meeting, held in September 2014, ahead of World Aids Day 2014. Hector’s name has been changed to protect his identity.

Edited by Eveliz Metellus, a UN Volunteer working with UNICEF Latin America and Caribbean Regional Office’s HIV and AIDS Programme. The story originally appeared here.

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