Posts Tagged ‘living with hiv/aids’

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

Positive Women Power

by Mary

woman-1595367_640I am an African woman of almost 52 years old and I have been living with HIV for almost 20 years. I consider myself to be a happy person. I love to laugh and enjoy dancing, I am a family person but most of all, I put effort supporting others, who are vulnerable.

Some years back I fell very sick and it all started with pain in my stomach.  Because of that I went through many operations – 8 in total. My health was getting worse by the day. One day the doctor suggested that we should check my blood for HIV and yes, the results came back positive. I had Aids.

When the doctor told me about my result my first reaction was: “Thank God for that, now at least we know!” And I immediately asked him: “So, what’s next?”  In a low voice, he said: “We will try to start with medication and hope for the best, but you are very sick and weak.”

I was hospitalized during 3 years and what kept me fighting were my children. Today I am dancing again, running up and down, helping others and looking forward to live for 50 more years to come.

After coming out of the hospital after such a prolonged period I felt as being given a second chance in life. I had a purpose to live and it was time for me to give something back. I wanted to support people who are in need and who have gone through the same I went through. In 2007 I started a foundation that supports women living with HIV/Aids, child mothers, widows and street children in my home country. Am also socially active in organizing open discussions about sexual health, sexual diversity and many other issues that women face in everyday life. Even though I am doing all these things, I am still being stigmatized because of my HIV condition and it is very difficult to come out and just say to the world: “Here I am, living with HIV.”

HIV is still a taboo in my surroundings and everywhere you go people still lack information about it. When you tell someone that you have HIV, they look at you as if you are dirty or you have been sleeping around. It makes it difficult to open and talk about it. I am happy that my children and the rest of my family know and they accept me for who I am.They are millions of women around the world living with HIV, yet many feel lonely. The stigma and taboo are the reasons why many are isolated and some can’t even tell to their loved ones.

The weekend of powerful women
Early November 2016 I spent the weekend among other women living with HIV. We met for a Vrouwkracht (Women Power) weekend in very nice and healthy environment in a forest area.  The weekend was organized by Hiv Vereniging. We were together for a whole weekend, so that we could work together on our dreams, that one day women living with HIV may live freely in a fair world, where they are loved and respected, free of stigma, violence and discrimination. The specific aim of the workshop was empowerment: to develop positive women’s advocacy skills and increase our confidence, so that we stand up for ourselves and may be influencing decision-making someday.

On Friday, I was nervous as this was my first time to meet so many women and share our stories about our HIV experience. Since I knew I was infected with HIV, I have never bothered to think about it much and never talked so much about it either. I survived, overcame my illness and I now live my life like normal person. So, this weekend I was going to sit with different women. And we are going to be talking about HIV….. But obviously, it was just my anxiety.

Most of the participants arrived and the room was filled with laughter and then in few minutes it changed, because we had to come to the reality to share about ourselves and what HIV meant to us in our daily lives. There were tears and sometimes meaningful silence. You could feel the power of each woman. Just looking around, it was obvious that we are a very diverse group of women, aged from 20s till 50s and from different countries, cultures and believes. All these women from different background handled things differently. It was not easy to hear how the HIV has impacted some of the women in their daily lives.

The three days spent together were filled with lovely discussions, sometimes things got very emotional and tears were shed and quickly tissues were passed around and hugs and spontaneous gestures of support abounded. We did a lot of sharing, lot of thinking and plenty of action was planned.

We are not alone
I want to thank Hiv Vereniging to organize a weekend for women living with HIV. The idea is for us to come together and share our experiences and talk about the challenges women living with HIV around the world are facing. And, to know that we are not alone. Don’t judge me! But let’s come together, where we find the grace, peace, healing, freedom and love.

Listening to different stories and challenges, I felt lucky to be in midst of strong and inspiring women. Women, easily misjudged because of their HIV status and because of that, many find themselves feeling alone and frustrated. Sometimes it’s sheer joy and sometimes it just gets too much. It feels like life itself, it is a rollercoaster.  What I learned in life is to embrace the journey. And I could share this with the other women.

One says, “I am a mother, a wife and a woman, who wants to be empowered and support empowering other women”. But then in that same moment she breaks into tears. Are those tears of sadness or of happiness, you wonder? So many mixed emotions come by, but we support each other to ensure that nobody is alone. Living with HIV can be a very lonely place when you can’t be open about it. I personally want to feel that people treat me the same. I am still me! I have not changed and I do not wear the cross that says “HIV”. Why do people judge me? Why can’t I be accepted and respected the same way as someone who has cancer or any other chronic decease?

More stories: I can’t tell at my work place that am living with HIV because I will be discriminated, I may even lose my job. At school my children are discriminated because their mother is living with HIV. Friends leave me because of HIV and now who can I tell?  And who will accept me? (“Maybe then I should die within inside me”).

Thank you for the opportunity of meeting other women with HIV, who can listen to me, support me, understand me, encourage me, motivate me and, treat me equal. My fellow positive sisters give me strength to fight and decide how I live my life as a woman living with HIV. I hope that, as sisters, we can encourage each other, share our wins and failures and share our lives, as positive women who are ready to be vulnerable to bring a change in the world.



11 2016

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

A cry from the heart that wants to live

by Eliane

June 13thEliane-3818
The day of the symposium Positief Geluid was a day full of joy.
A day I was happy to share my music from the heart!
A day to share my positive energy with everyone who was in the meeting!
The day I went home filled with joy for the many compliments I received from all the hiv-positive people I met that day!

June 14th
What a sad day it was. My brother lost his battle for life and passed away.
Diabetes, diabetes, how much I hate you!
But I am not going to give up!
My brother and I were both diagnosed with diabetes since June 1999.
In the same week we visited the Military Hospital in Bujumbura.
Last summer I was telling him that I am hiv-positive and he said ”Eliane, I know we both have diabetes and you are not going to fool me around with hiv, because you look great! Unless you say this because you want to do business!”
Since March this year he was suffering with kidney failure. They tried to do several dialyses. But he did not make it. It makes me so sad when people assume that only people with hiv are the ones that die! In 2012 I have lost a sister to cancer. A cousin of mine died of diabetes. My father died of malaria… I am unable to mention all of them here, because it is a pretty long list!

My point here is: how to survive all these sad moments? What is my strategy?
It is not an easy choice to put yourself first. It may seem selfish, but it is wise to think about yourself in such difficult times. You need to choose what is best for yourself.
So, I tell myself:  “yeah, what happened is sad,  but I am still alive and I am a survivor!
I am not going to be scared now because I just lost my brother to diabetes! More important even to live a healthy life myself, so that I can see my children grow up!”

Refusing to drown
In life we know that we can always ask someone for help, for somebody to talk to.
Life consists of ups and downs! I compare myself to a swimmer in de river. I need to keep my head up, otherwise I will drown.  I refuse to drown in negativity even though lately I was affected by a lot of death in my family. On April 25th my cousin‘s husband died of the consequences of hiv. The same date  as a very important day of our meeting as Ladies Loving Life. I was so much looking forward to celebrate life! I cried for few minutes and I wiped my tears, telling myself: ”here we are, all still alive!. If they would have accepted to take medications, they would have survived, just like we do! Shortly after, on May 3rd, my cousin died as well.

I am still alive and I am going to keep celebrating the life! It is a cry from the heart that wants to live.


07 2015

A thousand reasons to live and smile

door Eliane

From my place of silence
I choose the path of freedom
By speaking out the hidden truth
Regarding you, HIV virus!

Why walk the endless journey?
The fulfillment my life was missing
Was to be free from the corner of darkness,
Free from this silence, which continues to kill
Many HIV positive people!
Yes, medication can help,
But living a secret causes more stress!
Living a lie was putting me under depression,
Wearing the mask to pretend nothing is going on
It confused me till I almost lost my confidence!
And there was no pride in hiding behind this mask. Read the rest of this entry →


04 2015

I am not HIV!

door Amanda

As a young African woman living with HIV and depending on anti retroviral therapy for a healthy life, the future often seems bleak. The horizon seems to shrink even more when I remember the fact that I was born with this ‘stigma’ as it is often regarded as in my native homeland.

Often, my mind wanders helplessly to unanswerable questions such as Why me? Why was I born with this? Does God even love me? If he does why did he let me to be conceived by that particular couple or better still why didn’t he make me come out free of the virus? Will I ever have a meaningful life and achieve my dreams?

Thankfully however, I am often startled by the seemingly selfish nature of my questions as sometimes it is as though I wished someone else had ‘my virus’. My parents died from AIDS when I was 6 years old and even though I wonder why that happened to me, I am very grateful for my grandparents who raised me in a comfortable home and provided me with a good education. With a wrong dealing by fate, my situation would have been much worse…I could have died when I was much younger or I could have become a sickly orphan begging on the streets. Read the rest of this entry →


02 2015