Posts Tagged ‘HIV-positive women’

Hurt inside

By Mary

I am struggling with my feelings.  After apparently being one of the strongest people in the community I realized that I am just a human being. I hurt inside.

It hurts, it’s painful, it’s lonely, it’s hard, it’s sad, it’s shame, its embarrassing and it’s a pity. I have told you that I live with HIV.  It does not make people dangerous, you know, so you can shake my hands and give me a big hug.

But why can’t I tell my friends, neighbors, co-workers that I have HIV? Why can’t I tell? Am I not the same person? So, why is it so difficult for me to tell, and why can’t people accept me for who I am? Sometimes I want shout out and say, “Hey, I have HIV!” I would hope that my world could be open and peaceful, but the society I live in does not make it easy for me.

HIV is no longer a death sentence for people like me who take medication. Then why is so difficult still to talk about it?  And why it is so difficult for people to believe me? I long to be accepted, heard, appreciated, loved, cared for,  respected and. supported in the same way I was respected, loved, supported, appreciated when people did not know that I have HIV.

Although my viral load is undetectable, I still find myself with fear. Why fear? I know I can not infect my partner but still it’s just as hard as before to tell my partner that I am HIV positive. I feel like a balloon which is being pumped up and almost bursting. I am scared that, when that day comes I simply do not know how to react and I dread how people will react.

I am afraid to be rejected because of HIV, so I do not even try to date. Now I am alone and that’s killing me from the inside. Another thing is that I do not see myself as pretty anymore. I hate the way I look and how my body changed due to the medication I have been taking for years. I observe other women and sometimes I have tears in my eyes and I ask myself, why did this happen to me? Is there any man who will love me with this shapeless body? Insurance companies do not recognize my problem and deny my request for plastic surgery. According to them it is not a serious problem as it is not in the face. Well, to me it is right in the face!

At times I do not feel like taking my medication because I think that when I stop maybe my body will go back the way it used to be. But then I remember that the medication keeps me alive. I wish the insurance companies will hear me, understand me, see my pain, and see beyond my face. I wish I could lend them my body, just for them to feel what I am going through every single day.

HIV, where did this big disease with small name come from, and how did it come to me? Did I sleep around with lot of men? What happened is a question I ask myself all the time. How come that some people I know sleep around are healthy and bad luck struck me? Questions and questions and I will never get the answer.

I am convinced that when my body shape is better I will feel more confident about myself. But will I ever be able to get to that point? Whereas my own insurance company refused to help me, my neighbor gets operated because her boyfriend didn’t like her belly and the insurance paid for it. Is that not annoying? I certainly made me feel inferior: was my request rejected because I have HIV or come from another part of the world? Questions and questions but I get no answer or help, so what can I do? Do I have to live like this for the rest of my life, please can someone tell me? I feel quite desperate.

HIV, why did you choose me? How come that this invisible thing with small name hurts people. It has made so many people to become isolated and angry with themselves? I feel what it is like and I am hurt. How come it’s not easy to tell? What do we need to do to make people love us the same way as before? I did not choose this – it just happened to me and it was bad luck. It could have happened to them just as well. I am no different from them.

Do we need to raise more awareness? How come that we can’t even tell to our own children? Maybe we should try to promote youth participation, using schools. But even then it’s still a problem, because the adults are the ones whom I think need more awareness. They are the ones who are judgmental. Not the youth.

I just want to thank God because he has blessed me with group of sisters who are now like a family to me. They make me feel loved, cared for, respected and supported. Thank you all my lovely sisters, for listening and caring.


03 2017

Living positively with HIV

by Africa Web TV

living_positivelyMany people who are diagnosed with the HIV virus stay quiet about it for fear of being stigmatised and isolated by the society. But the Burundian Eliane Nininahazwe wants to change attitude and perceptions about people living with the HIV virus. She wants to show the world that HIV is like any other disease. If discovered and treated on time, one can lead a normal, active life. She is not your typical African.
This is her story.


12 2015

Positive mind, positive dance

by Eliane

2015-12-16 16.05.05I was and I still am proud to be part of the actual national anti-stigma campaign “Hiv uit de kast”. To be honest: I did enjoy all positives reactions coming from all over the world. I was happy and also looking forward to my annual performance on Sunday 13 December in the local festival “Gluren bij de Buren” in Amersfoort. Here I would play my traditional Burundi instrument, made from cow horn, and dance at traditional African music.

But on that same day my mood changed completely when I learned what happened the day before in Bujumbura, the capital of Burundi. The place where many of my family member live. Innocent youth died in their homes in a big attack. My heart felt shattered in a thousand pieces. No one could pick them up, except me. It felt as an overwhelming emptiness in my heart. I had so much emotions I was confused on what to do. My country is a source of worries. One part of me wanted to abandon the plan for the day. But the greater part of me stood up and decided to go on and do the performance.

What gave me courage in that moment? What made me decide? I have been thinking about it and want to share it with you.

My performance was programmed in Amerpoort, an institution for of handicapped people. But the performance was open to other people as well. Everybody was welcome to the Indonongo singing and dancing, as this is what the local festival is all about. The moment I saw people walking in and responding to my smile, my inside voice was telling me: “Eliane, you can bring more joy to these people. That is what you are here for!”

At that point the whole game changed for me and I introduced myself. I heard people telling me: “Hey, we saw you on a poster on the road! Oh yeah, that’s the lady on the poster in our pharmacy! You are a brave woman, thank you for the good work!!
It was as if they gave me the adrenaline needed to start my performance. I was so aware that in the room there are people knowing that I am HIV positive and they still admire my performance!

It was a great and joyful moment when I saw happy faces of children, parents, elderly and young people, dancing full of energy. A lady told me that my music is as full of energy as I am and that my energy is very contagious (in a positive way)!

I got a lot of positive feedback on how I run my show and I was asked to come especially for the handicapped people living in that institution and to make music with them. It was the first time they were singing and dancing in their wheelchairs on African music.

After all it turned out a successful day and I am glad I listened to my inside voice and did what I came to do, instead of keeping on mourning about Burundi. My country is part of me and it is always in my heart. But the people around me here and now in Holland are equally important to me.

Merry Christmas and happy New Year!

Sister Love,


12 2015

Double positive

bron: Radio Nederland Wereldomroep (hier kun je ook een radiofragment beluisteren)

Vrouwen in Suriname die aids hebben of geïnfecteerd zijn met hiv hebben het zwaar te verduren. Nog altijd worden velen verstoten door hun familie of raken hun baan kwijt. Het gevolg voor deze vrouwen en hun kinderen is grote armoede. Ethel Pengel, die zelf hiv-geïnfecteerd is en zich al jaren inzet voor zulke gevallen, is een nieuw intitiatief gestart.

Voorlichting alleen schijnt niet te helpen. Samen met gezondheidswetenschapper Juanita Malmberg en cultureel antropoloog Carla Bakboord heeft Pengel de stichting Double Positive opgericht. De naam verwijst naar de infectie (sero-positief) en de positieve benadering door de stichting. De bedoeling is de vrouwen cursussen te geven, zodat ze een baan kunnen vinden.

De andere kant moet dan ook aangepakt worden, zegt Bakboord. “Je moet ook met bedrijven en de overheid praten, zodat ze de vrouwen aannemen.” En dat is niet gemakkelijk, weet ze. Grote groepen geïnfecteerde vrouwen zijn ontslagen en vinden geen werk meer. Daarom kloppen ze aan bij Pengel.

Ook veel gezinnen lijden onder de situatie. Omdat de vrouw vaak de enige is die inkomen heeft, vervalt het gezin in armoede. De huisvesting en verzorging van de kinderen kan dan niet meer betaald worden. “Ze hebben geen water en stroom meer. Het huis wordt afgenomen, ze hebben geen baan. En de familie heeft ze in de steek gelaten.”

In Suriname zijn al heel wat projecten ter ondersteuning van hiv/aids-slachtoffers en er is voorlichting. Maar het stigma is nog steeds niet verdwenen, zegt Bakboord, die ook actief is als vrouwenrechtenactiviste. “Er is nog steeds veel onbegrip.” De voorlichting schiet volgens haar tekort als er alleen posters worden opgehangen en spotjes worden uitgezonden. “Je moet in dialoog gaan, praten met bedrijven. Duidelijk maken dat je niet geïnfecteerd wordt door een persoon met hiv een hand te geven.”

Double Positive wil iets doen voor de vrouwen en het bedrijfsleven beter voorlichten. Onderzocht wordt waar de vrouwen behoefte aan hebben. “Bijvoorbeeld computercursussen. Misschien kun je ook van huis uit werken. Belangrijk is dat we de vrouwen kunnen helpen.” De overheid zal ook worden benaderd om beleid te ontwikkelen voor het in dienst nemen van mensen met hiv/aids.


03 2011

50/50: Human Rights for all

Ingezonden brief: 

Dear Positive Sisters around the world. 

I salute you all. 

Whilst I have only been able to mention a very few of you, this piece is written for you all. 

With my warmest regards,



Voormalig voorzitter van de ‘lnternational Community of Women Living with HIV/AIDS (ICW)’ Alice Welbourn, is wereldwijd actief voor, en voorvechtser van de rechten van alle vrouwen die leven met hiv.


12 2010

HIV associated with poorer sexual function for women

Sexual function is poorer in HIV-positive women than in women who are HIV-negative, US investigators report in a study published in the online edition of the Journal of Acquired Immune Deficiency Syndromes.

For women with HIV, increasing age and a lower CD4 cell count were associated with lower sexual functioning. “Our analysis reveals that the burden of sexual problems is significantly higher among women with HIV infection compared with HIV-uninfected women”, write the investigators.

Thanks to antiretroviral therapy, many women with HIV can expect to live a long and healthy life. The majority of HIV-positive women remain sexually active after their diagnosis, and given the efficacy of antiretroviral therapy it is likely that a large proportion will remain so for several decades.

There has been little research into sexual function and satisfaction amongst women with HIV. Nevertheless, there are good reasons to believe that sexual problems occur more frequently in HIV-positive women than in those who are HIV-negative. Other chronic illnesses have been associated with reduced sexual satisfaction and functioning, as have the use of illicit drugs and alcohol. In addition, it is also possible that antiretroviral treatment may have a detrimental impact on sexual function. Investigators from the Women’s Interagency HIV Study (WIHS) therefore conducted a cross-sectional study including 1279 HIV-positive and 526 HIV-negative women that enquired about sexual function and satisfaction. The study was conducted between 2006 and 2007.

All the women completed an established questionnaire (Female Sexual Function Index) that was used to assess several areas of sexual satisfaction and function including arousal, desire, lubrication, orgasm and pain during intercourse. Higher scores (maximum, 36), were associated with better sexual function, and lower scores with poorer function. Information was also obtained on age, menopausal status, mental health history, co-morbidities, CD4 cell count, viral load, the use of antiretroviral therapy and HIV treatment side-effects to see if any of these factors had an independent association with sexual function. Overall, the women with HIV had significantly lower sexual satisfaction scores than did the HIV-negative women (mean, 13.8 vs 18, p < 0.001).

Amongst both HIV-positive and HIV-negative women, higher sexual satisfaction scores were seen in women who were younger and who were married or living with a regular partner. Poorer scores were recorded for both HIV-positive and HIV-negative women who were menopausal, had diabetes, were depressed, or who were taking medication to treat seizures, high blood pressure, or heart disease. Amongst the women with HIV, lower sexual functioning scores were observed in those whose body mass index was in the underweight range. Statistical analysis that controlled for potentially confounding factors showed that HIV infection (p < 0.001), not being in a relationship (p < 0.001), being menopausal (p < 0.001), and depression (p < 0.001) were all significantly associated with a poorer sexual function score.

Next the investigators looked at the relationship between sexual functioning scores and reported sexual behaviour. This suggested that higher levels of sexual function were associated with a more active sex life, with women with higher reported levels of sexual function and satisfaction reporting greater numbers of sexual partners.

Finally, the researchers restricted their analysis to the HIV-positive women to see if any HIV-related factors were connected with sexual function. Their first statistical analysis showed that the presence of lipodystrophy (p = 0.003), and a lower CD4 cell count, below 500 cells/mm3 (p = 0.005), were both significantly associated with poorer sexual function scores. However, a subsequent model that included age as a variable showed that only CD4 cell count (p = 0.02) and increasing age were significant (p < 0.001). “Our study shows a clear link between HIV infection and sexual problems among women”, comment the investigators.

They believe that their research has implications for the routine care of women with HIV and suggest “there is a role for assessment of sexual problems in overall care of women with HIV infection, particularly those classified as having AIDS.”

Wilson TE et al. HIV infection and women’s sexual functioning. J Acquire Immune Defic Synr (online edition), 2010.

  door Michael Carter      



03 2010

Make a difference

Yoell (‘you will’) is de merknaam van een unieke sieradenlijn, die door hiv-positieve vrouwen in Zuid-Afrika eigenhandig wordt gemaakt. Vrouwen met hiv worden in dit deel van de wereld maar al te vaak verstoten uit hun familie en leefgemeenschap. Door het vervaardigen van Yoell sieraden verdienen deze sisters genoeg om zichzelf en hun gezinnen te kunnen onderhouden. Door met hiv ‘gewoon’ door te leven, te werken, kinderen op te voeden en gezonde kinderen ter wereld te brengen, zijn zij in de township bovendien hét voorbeeld van waarachtig women empowerment.

“When purchasing this beautiful piece of jewelry, made by HIV infected women in my country, you support the ‘mother and child first’ program of MKI in their endeavor to prevent the transmission of HIV (and with it AIDS) from mother to child.”  – Desmond Tutu –


02 2010