Sometimes I feel ashamed to complain

Cheyenne came over from Burundi, because living there became too dangerous for her. Living in Holland has disappointed her, because she has had mixed experiences.

“In Burundi I had a better life than I have here. But after I was tested HIV positive, my husband got violent. Also, over there, there was a very heavy stigma on HIV. Last but not least, there was a war going on between two tribes, the Hutus and the Tutsis. I am a child from both parts, my mother is a Tutsi and my father a Hutu, so we, my brothers and sisters, are mixed children and we did not feel safe there. There was always a conversation about where we belonged. It was very dangerous too. I wanted to stay in Burundi, because I thought that I could manage remaining there. I even paid for my medication myself. It was very expensive but I could afford it.”


“After five years of marriage I had never been pregnant. In Burundi they told me many times I had to be patient and to wait. I worked for an NGO and when I had to travel for a conference about women and peace in another country, I decided to visit a medical specialist there. Officially I came for a fertility check, but I wanted to be tested on HIV as well. I told the woman in the clinic: ‘Before I get pregnant I like to be tested on HIV first’. She refused, saying that first I needed counselling. When I told her that I was a counsellor myself, she agreed. Fifteen days later I went for the results. The woman was very sad, she had tears in her eyes. ‘I'm sorry’, she said, ‘the result is not that good’.”

“It is not right to say that I didn’t expect it. In Africa everyone lives with this idea that he or she might be HIV positive. But you just act like you are Superwoman and you won’t contract it. That's why I postponed the decision to have myself tested that long. I had no reaction when the lady told me I was HIV positive. She asked me if I still wanted to become pregnant. And I said I didn't know. At that time there was no medication for women who were HIV positive and pregnant. It was 2001, it was Africa.”

“Back home I did not know how to tell my husband, but after three weeks I did. He accused me of being a crooner. That I had known I was HIV positive all along, that's why I went for a test and that he knew it before we got married. He did not want to do a HIV test himself. There was no need, he said, because he was healthy. But I was ugly to his opinion. And indeed, I had pimples, my skin became more black and the medication made me very sick.
After that, the violence began. He was cruel and insulted me publicly, telling people that I'm HIV positive. I found out when one day a mentally disturbed person came to me and said: 'They say you are HIV positive’.”

Do you believe the street or me?
“It is not easy in Africa to go and tell someone that you are HIV positive. You never know who will be stigmatizing or who won’t. I was lucky that I worked for a NGO. They do not throw you out when you are ill. I did not tell them that I was HIV positive but they could see that I was ill.
I was also lucky that my family was not stigmatizing me. I kept my HIV status hidden for my mother, but when I got malaria, people started talking about me: ‘She is going to die’. My mother asked me questions. She told me that people on the street said something. I did not want to make her cry. So I asked her: ‘Do you believe people in the street or do you believe in me?’ Then she said: ‘OK, let's stop the conversation, but I know what I know’. And our conversation stopped.”

Why am I here?
“I left my husband and found myself another house, but there he came to my door to insult me and to beat me up. The war was also getting worse, the robbers sent me letters that I had to contribute otherwise they would kill me. And I said to myself: 'why am I here?' I thought about living in Malawi, but I knew he would find me and kill me there.
I decided I had to live somewhere else. First I tried to go a country where they speak French. I tried to go to Belgium, France, Canada, but could not get a visa. I could get a visa for Sweden, so I left Burundi to go to that country. In Amsterdam I had a stopover and I got out of the plane. During the flight someone had suggested that Holland might be better for me: ‘It's a small country and I think the people are nicer than the Swedish’. I realised that Sweden is a really very cold country, that I was a refugee so I could go anywhere. Why not Holland?”

“The first two years I spent in several AZC's: Arnhem, Klazienaveen, Emmen, Dronten, Ermelo, and Ter Apel. When I arrived in the first AZC, in Ter Apel, I immediately told them about my HIV and asked for my medication and something to eat with it. They gave me my medication but nothing to eat. Then the police came to see me. They started doubting my origin, insinuating that I was lying and that I had come here because I wanted medication.
The first two and a half years they moved me around several AZC's. In a situation like that you don't know what they are up to. I think it had to do with my HIV, and me being so open about that. At that time, I lost hope and felt depressed. I was depressed already with my illness and then I got depressed because of my situation. I did not feel welcome at all.”

Moved around
“I got medical care, but they did not check my medication. I got all the side effects of the medication, but the doctor did not do anything really to treat those. When I asked the doctor (huisarts) in Klazienaveen to treat my pimples, he gave me Vaseline. That did not work. He said: ”We are doing our best and if you had stayed in Africa you would have been dead by now”. He was from Asia or Indonesia, so I asked: ”Are you yourself in your country?” Then I asked for another huisarts.
I was sent to another AZC and later they moved me around several AZC's. I could never make friends. In such situations you don't understand what they are up to. Some other people were moved around as well, but some stayed in one AZC for six years. My longest stay was six months. I don't know for sure, but I think it has to do with my HIV and me being so open about that.”

Emergency situation
“However, a few years later I became very happy: I got my residential papers, I had a friend and I was pregnant. I felt I could move the world. But it went wrong. Two weeks before the date of delivery, at a regular check at the hospital, I was checked by a student, who could not find the baby's heartbeat. The gynaecologist thought the student had made a mistake, so she did not check any further. But I did not feel the baby moving anymore. After I told them, there was an emergency situation. I was questioned: Did I feel pain like I was giving birth? I said no, I did not know what to feel. Every pain I had, was related to HIV for me.”

“After I gave birth, the baby only cried once. They told me he would not survive. And if he would grow up - and they did not expect this - he would be handicapped for life.
After four days they started convincing me to give him a soft death. Euthanasia. They decided it was better to kill the baby. It took them another three days to convince me that the baby had to die.
At that time I had my staying permit only two weeks. I knew nobody to really help me; my friend was not officially my partner, all these things made me feel very vulnerable. So my son died. I think they would have done their best more if I had been a Dutch woman. I was again very disappointed in the Dutch, because I felt myself being forced into a decision I did not really want.
I had lost all the things I had, because of HIV. That is how it felt. My social status, my friends, my child. Everything. Sometimes I was desperate to such an extent I even started to doubt my capacities. I am nothing, I am useless, I thought.”

“Dutch people ask too much from refugees. Why do they think I can't work because I can't speak Dutch? In Canada people work even if they do not speak the language. I applied for a lot of jobs but I was always rejected. I told the social workers that I want to work, but they are not really helping me. Those negative reactions make me more depressed, so I decided to stay at home. I get an unemployment benefit from social services and I'm getting some education: ‘sociaal agogisch medewerker’. But I doubt if I can find a job here. As soon as I finish this course think I go and try to find a job in Belgium.”

7,5 points
“I still have the same HIV internist and I have another ‘huisarts’. I'm content, they are good. I think they could do more to prevent or treat the side effects of my medication. For instance treatment of lipodystrophy. My experience with Dutch healthcare is not good, but I cannot blame the whole system. If I have to give marks, I give it a 7,5. What I especially like about the Dutch is that they are well organised. Their social system is good, also the public transport system. The State takes notes about official matters and you can trust the promises. In Africa you never know if your request will be heard.”

Not separated
“I meet other African HIV positive people at PAMA meetings. This is very important for me. Maybe I am happier than others, I have my staying permit, and sometimes I feel ashamed to complain. I do not know many Dutch people with HIV. I think maybe most of the Dutch HIV positive people are gay and they just do not want to mix with us. I also think that people should be told that life here is not the same as it is in Africa; here you can choose to be gay. People here have different points of view, different conceptions of life; they make different choices. You have to make people understand that hetero and homosexual still can be friends. In Africa homosexuality exists, but in the quiet. It isn’t talked about.
Maybe the language also is a problem. Dutch people want to speak Dutch. There is not much information in English, let alone in other languages. I always advise everybody to speak Dutch, although it is a difficult language to learn. And people who don't have a staying permit must pay to learn Dutch.
I would like it if Dutch people would join PAMA. PAMA is for everyone, we don't invite anybody, you're just free to come. PAMA thought that the Hiv Vereniging does not meet the needs of black people. But we did not want to be separated as such.”


Hiv Vereniging Nederland

Eerste Helmersstraat 17


020 6 160 160
>> directions



020 689 25 77

For questions about living with HIV. Available monday, tuesday and thursday from 2 PM till 10 PM

>> read more


Support the association and become a member
>> contact Servicepunt