Here you can find stories and interviews from women who are living with or working with HIV. Do you wish to share your story? Please e-mail us in order to plan an interview. You can chose to be anonymous or not.
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Yvette: We fought for medication in the streets
– We fought for medication in the streets
Yvette came from Burundi to Sweden eleven years ago. Before involving herself in HIV issues in Burundi, Yvette felt scared, lonely and depressed. But inspired by the activist Jeanne Gapiya, she decided to become open about the fact that she is living with HIV. After that, things started to change for Yvette. – I finally had a network, she says.
During many years, Yvette was merely waiting for death to come. She lost three of her children between 1994 and 2001 – the oldest of them only reached 1,5 years. Yvette knew that she was HIV positive, but did not dare to tell anyone. She was afraid that people would exclude her. At last, it was Yvette’s mother that forced her to go to the hospital. At that time, Yvette had tuberculosis, could not eat, and she weighed only 33 kilos.
– I remember my mother carrying me like a child to the taxi. In the hospital they told me I had tuberculosis. My mother took me to and from the hospital every day for three months. She forced me to eat beans even though I really hate beans. If I dropped my medication on the floor, she made me pick it back up. I was not allowed to miss a single pill, Yvette recalls.
After a few months, she started feeling better. Still, it would take some time until Yvette decided to open up to her mother and others about her HIV status.
Meeting a heroine
It was after her son was born that Yvette decided to make changes in her life. She got to know an organisation called ANSS (“The National Association for the Support of people with HIV and AIDS” translated from French) and also Jeanne Gapiya, who was an activist and the leader of the ANSS.
– Jeanne Gapiya is a a true heroine. She was the first woman I met who was open about how it is to live with HIV. Jeanne and her organisation have helped an incredible number of individuals and families, says Yvette.
Getting involved in ANSS was the first step on the road towards feeling good. The people who participated in the organisation’s activities received support in different ways – it could be everything from groceries to money for education. But to Yvette, the most important thing was the social network that she found through the activities.
– We danced, we gave each other motivation. We fought for medication in the streets. My neighbors could not believed that I dared to do so, but I felt really good, says Yvette.
“Too open” about her HIV?
In 2006, Yvette moved to Sweden with her tow sons. She did not know much about Sweden, but she remembers having studied Scandinavian geography in school. It said Sweden had a lot of forest, and that 99% of the population owned a phone, she recalls.
– The thing with the phones was so strange to me. Where I lived, we lit the lamps with oil. Scandinavia became some sort of dream to me. Sometimes people have dreams that disappear, but my dream continued, says Yvette.
Even though Yvette is happy with the both the medical and social treatment she has received since coming to Sweden, it has been hard for her to get a job. Sometimes she asks herself whether she has been “too open” about the fact that she has HIV.
– I trained to become an assistant nurse, I did my internship, and I got great references and grades. The principal at my school recommended me to be open about my HIV status when doing my internship, and so I was. When I applied for a job where I had done my internship, I was turned down, says Yvette.
She did not give this incident much thought at first, but later she did a new internship with the same employer. After another successful internship she applied for yet another job at the same place, but she was turned down again, with the feedback that her Swedish was not good enough.
– They said it had to do with my language level, but I know people who applied for and got jobs there, and they speak less Swedish than I do. I started thinking that it was my openness about HIV that caused the employer not to hire me, says Yvette.
Getting rid of negative emotions
Sometimes, Yvette feels troubled about not having been able to get a job. Her strategy to cope with such feelings, is meditation. More specifically, it is a technique called EFT – Emotional Freedom Technique.
– After I discovered meditation, I became like a new person. I have stopped worrying, and I no longer feel fear. I have stopped comparing myself to others, and I do not get jealous. The technique has helped me get rid of negative emotions, Yvette explains.
Recently, Yvette decided to leave her career in the health sector behind, and rather start her own business for the import of clothes and accessories from Rwanda. Yvette know women who manufacture bags, clothes and baskets. She even did a course in entrepreneurship through Arbetsförmedlingen, and has been in touch with Almi to see if they can help her with finances. Her personal business still lacks approbation for funding, but she keeps dreaming.
– Defeats do not make me feel down – rather they motivate me. I keep living my dream, and at the same time I develop myself and my tiny business. I also think that networks such as Knowledge Network for women who are living with HIV will become important to me in the future, says Yvette.
Naomi: The mind is powerful
– The mind is powerful: if you think negatively, negativity will come
Naomi has endured situations that most people encounter only in their nightmares. Nevertheless, her worldview is nothing but positive. While the health sector in her home country Honduras made her feel ill and inferior, the experience in Sweden has been different.
I meet with Naomi in Stockholm. My first impression is that she is an elegant and humble woman, but also decisive. She came to Sweden from Honduras about a year ago, and is now waiting for a reply from the immigration authorities concerning her asylum application.
– The utter silence when I lay down in my room, in the loneliness of the forest, allows me to hear my own heartbeat. Sometimes I feel depressed, and sometimes I cry. It is okay to cry, says Naomi.
The room in the forest is Naomi’s temporary home. Most of the time she feels calm and happy there, but this year has been busy in terms of moving. It was at its most chaotic in the beginning, just after Naomi had landed in Arlanda, Stockholm’s airport. She was in Sweden, but had nowhere to go from there.
– I was in Arlanda for about four hours, walking around in circles. I knew that there should be an immigrations office in the airport, but I had no idea where. I remember thinking “what do I do?” “what do I cling to?”, Naomi recalls.
After having wandered around in the airport for quite some time, Naomi met two police officers. Helped by basic English skills, she explained that she was there to apply for asylum. The officers brought her to the immigrations office where she could present her documentation. The documents testified that threats and persecutions had taken place due to Naomi’s gender identity and for being a Human Rights defender, as well as violent episodes. Naomi lives with HIV, but the biggest health challenge she faces today is a challenge caused by a traumatic incident dating back to 2014.
– There was a time when my boyfriend suffered a lot of persecution, which caused problems for both of us. One night when I was out with my friends, someone kidnapped me. They raped me. They shot me. The bullet punctured my intestine, and due to that I had to do a Colostomy, Naomi explains.
Because of the injuries, Naomi has a special need for privacy and a space in which to withdraw. This was not easy to find in the first two places to which Swedish immigration authorities sent her. First, they sent her to a place for men. Naomi was assigned male at birth in Honduras, and even though she identifies as female, the authorities in her country have not allowed her to change her old name nor her legal gender. Due to this, she was sent to the men’s place on her first day in Sweden.
– I refused. I definitively could not accept. When I arrived there, the men in the room started making some sort of circle around me to have a look at the new person. I felt scared, says Naomi.
Luckily, the employees understood that Naomi could not stay the night. They sent her to a place specifically accommodated for LGBTI asylum seekers. After a while Naomi was permitted to live in her own tiny apartment.
Encounters with the health sector
It was Naomi’s HIV specialist doctor who assisted her in finding a more private place to live. Naomi is very satisfied with the treatment she has received both in the general and the HIV specialized health sector.
– When I travelled to Sweden I brought medication that was to last for three months. All people who seek asylum in Sweden are called to a doctor’s appointment, but it can often take two to three months before that happens. I am a person who needs to move things fast, so I started looking online instead. I found it easier, says Naomi.
Naomi’s search led her to Postihiva Gruppen (PG). She received information about where she could go to get treatment and medication. She got in touch with the local hospital, and all in all the process was problem free.
– A big difference here in Sweden is that the health care workers make you feel normal. In Honduras, there is a huge lack of education within the health sector. Many health care workers act as though they are superior to you only because they have a “better” health condition. They make HIV positive people feel truly inferior, says Naomi.
Additionally, she has noted that Swedish health personnel is less concerned with what people living with HIV “cannot” or “should not” do. While health workers in Honduras emphasize stress and the avoidance of stress as the main key to maintaining good health, Naomi appreciates that Swedish health care workers emphasize virus levels and undetectable HIV.
– I should think that if my virus levels are zero, then my HIV is undetectable, thus I am fine, Naomi ascertains.
A different life
Naomi has been through a lot, but it is definitively her good mood and positive attitude that characterizes her the most.
– Sometimes I feel that the whole world is falling down on me. But the mind is powerful: if you think negatively, negativity will come. Then I think about people who have not had the opportunities that I have had in life, and I thank God and his grace that new opportunities keep coming my way. For me, depression is not a viable way out. I have so many things to do – I do not have time to be depressed, laughs Naomi.
She would rather spend her precious time to learn Swedish, work, serve as a volunteer, and even develop as a fashion designer.
– I want to be a productive person. I wish to give back to the society that has given me a lot, if possible to the maximum. Instead of thinking about negative things, I want to think that I am Naomi, and I have lived a different life.