Tag Archives: stigma

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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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Surviving Ebola, rebuilding a life – Alhassan’s story

The first time I met Alhassan Kemokai (34), at Kenema Hospital in early August, he was bounding out of the Ebola treatment unit to a rowdy chorus of cheers and singing following his 12-day battle with the deadly virus behind the plastic-sheeted walls of the Ebola unit.

Alhassan was beaming that day. Met by family members who had also survived, he stood in front of a small gathering of delighted friends, family and local media and announced “To see myself out [of the Ebola ward] I’m very excited, I’m very happy.”

He was full of extraordinary stories from inside the unit where he suffered the worst symptoms of the disease – vomiting, fever, diarrhea and bleeding – but somehow managed to recover. While gradually gaining his strength he played a support role to the few nurses working in the ward: “I was like a nurse in the hospital, if someone died I would disconnect the IV drip. If I touched the body of a dead person, I have no worry about infection because my system is immune, so I would help the nurses do their high-risk jobs.”

(c) UNICEF Sierra Leone/2014/Dunlop

Alhassan contracted Ebola when he visited the home of his sick mother – he recovered, as did his siblings.
(c) UNICEF Sierra Leone/2014/Dunlop

Alhassan was exposed to the virus when he visited the home of his ailing mother 5km outside of Kenema where they both live. He started showing signs of fever several days after she died and his sister was later infected, as was their brother. They all survived – and Alhassan’s wife and child were spared infection thanks to his decision to isolate himself as soon as he displayed symptoms.

Almost three months since that first meeting, Ebola has claimed hundreds more victims in Sierra Leone. Alhassan, while devastated by the loss of his mother, is still smiling and has not forgotten the second chance he got at life. He is now part of a growing group of people who represent hope in an otherwise devastating situation. There is currently an official count of 656 Ebola survivors across Sierra Leone, a number that is increasing as more people become infected and then later recover from the virus.

But the path of an Ebola survivor is not an easy one due to the stigma they suffer, the trauma they are recovering from, and the life they must attempt to rebuild.

“My world has changed dramatically since Ebola affected my family. When I tell people I am a victim of Ebola they are scared – there is a distance between us and nobody wants to get close,” he said.

(c) UNICEF Sierra Leone/2014/Dunlop

Alhassan holds up his discharge certificate. (c) UNICEF Sierra Leone/2014/Dunlop

Ebola survivors in fact pose a minimal risk to the community after having developed the resistance to beat the disease. A person who has made a full recovery from Ebola is unlikely to become infected again.

“Sometimes I tell these people that are scared of me that I am the safest person in Sierra Leone. I tell them I did not write an application to get this disease, it is a disease that can happen to anyone.”

The families of survivors can be victims of stigma and ridicule, and for Alhassan this continues to be a concern for his own family, “Our families are also victimized, the situation is improving as people learn more about Ebola but even now people still point at them and say ‘they are Ebola people’. I want everybody to know we pose no threat.”

Alhassan is also faced with the challenge of piecing his life back together. He no longer has a job and as the head of his family has to support his siblings who have also recovered from the virus and need support to restore their fractured lives.

“The house where my mother lived and was sick has now been burnt, all her belongings are gone. I had to destroy many of my things as well which need to be replaced. My younger brother and sister need help as they are both studying and I have to pay their school fees and I have to provide for my wife and child.”

Social mobilizers, carrying illustrated posters, speak with people about protecting themselves against Ebola and preventing its spread. © UNICEF/NYHQ2014-1815/Bindra

Social mobilizers, carrying illustrated posters, speak with people about protecting themselves against Ebola and preventing its spread. © UNICEF/NYHQ2014-1815/Bindra

On 16-17 October the Ministry of Social Welfare, Gender and Children’s Affairs, with support from UNICEF, CDC and partners, brought together survivors from across Sierra Leone to a conference that aimed to provide a forum for Ebola survivors to share their stories, seek support and address the stigma and shame they have suffered. The meeting was also an opportunity to discuss the role of survivors as advocates for increasing Ebola awareness and as providers of care and support to those infected.

Alhassan is keen to play a meaningful part in advocating for Ebola survivors and increasing knowledge of the disease: “I know it’s my role as a Sierra Leonean and an Ebola survivor to sensitize others and teach people about this dreadful disease and about the plight of survivors.”

He also sees the conference as a great way to meet others who have shared his uniquely harrowing experience: “When survivors get together we are just like one family, the only people who understand what it is like to suffer and survive this disease are those people who have been on an Ebola ward. We were in hell and we have a lot of experiences to share and we can comfort and support each other”.

“I would also like to one day meet other survivors from other places, from Guinea and Liberia. If we can sit together and discuss how we survived this terrible hurdle it will help everyone to heal.”

The conference is a first step in a wider plan by UNICEF to support the plight of survivors by providing psychosocial help and by establishing roles that take advantage of their immunity so that they can provide care for suspected Ebola patients and Ebola contacts.

It is through dedicated people like Alhassan that the important role of survivors in tackling Ebola in Sierra Leone can be realized, “I am very proud I have survived Ebola, and I am thankful to the God almighty. It is our responsibility to sensitize others. I want to be an advocate so we can eradicate this dreadful disease in our country.”

Jo Dunlop is a UNICEF consultant based in Sierra Leone.