Archive for the ‘posts in english’Category

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.

17

03 2017

Posidiva on the Catwalk

by Eliane

Eliane 1 The competition for being the “Face of Winter Amsterdam” was open to everyone. The organization Fashion Outreach Amsterdam was organizing a fundraising event to support the homeless in Amsterdam. It was meant to raise awareness on issues that hardly get attention in our society. One of the issues that need attention are the homeless in general, and I choose to be the voice for the voiceless in raising the issue of HIV within the community of homeless. There is hardly any attention given to that topic. I was selected to be one of the top 5 finalists in the competition, as an HIV activist – “Know your Status”

We all know that HIV does not discriminate. As anyone else also homeless people can be infected. For them it is even worse – they will never speak up because of the Stigma. They have different needs. Survival in the street jungle and poverty. Stigma kept me in the closet for ten years. I used to hide my medication carefully in a private room where nobody could see it. Imagine homeless who don’t even have a special room. How stressful life can be. For them there is no or little information available on their rights to decent healthcare, especially as a homeless individual living with HIV.

So, Saturday 14 January was my D-day!  I was looking forward to speak and inspire people during my presentation. I had great support from my husband, my friends from Amersfoort as well as some Posidivas. There were also special quests that came, a few people from the international organisation Young Positive, who were in Amsterdam for their annual meeting. They came along with my brother from another mother, HIV activist from Burundi, Cedric Nininahazwe. I felt so blessed to be surrounded by people who love me and came there to support me!

Eliane 2 Eliane 3Before I started out my walk on the catwalk I really had to giggle.  I was about to tick one of the things from my bucket list! It felt amazing to realize that I am doing something at 40 that I really wanted badly at the age of 16, but because of living in war zone, I was not that fortunate!
So, when this opportunity came up, I took it with grace and pleasure. I walked with no fear and no shame! Beautifully dressed and elegant. I did not win the first prize but the title I got as second made me even prouder:

I won the title of Ambassador for Youth within the Migrant Diaspora.

Lessons learned: never say never you give it a try!  And of course, it was important to bring my message across of breaking taboo and stigma around HIV, just by showing how beautiful and smart looking I am as POSIDIVA.
I am proud of this catwalk experience and of course, I will continue to spread the word!
Posidiva Eliane Becks

17

01 2017

40 is the new 20

by Eliane

eliane1Being happy does not mean always getting what you want. Being happy means loving what you do have and being thankful for your life.
I am thankful for reaching my 40th birthday! I did not choose to have diabetes and HIV in my twenties. I have asked myself repeatedly if i would ever make it to my 40th birthday. And here I am! Alive and kicking. These two fabulous twin diseases have brought me a lot in my life. Especially they brought me a big new family, new friends.  And a sisters’ family (Posidivas).

I have been through a lot in my life so far, but honestly, it has made me who I am today!  I have looked death in the eyes when I was only 16 years old. During the civil war in my home country I had to learn to survive at a young age. Every new day was new challenge in life. Worries about sickness? No way! It was survival: “Will tomorrow come to say hi to me? “

This impacting experience has kept me upright so far and it has made my personality incredibly strong. I will not allow anything to come in my way.  I choose to fight when I know I am in my right! I am happy that I did not waste my time. I followed my dreams and so far, I have achieved so many things.

I am a Posidiva, who knows what she wants and fights for it!
I want to be treated equally and I want the stigma on HIV to end!
I am 40 years old and I am very proud to reach this day – although I don’t feel like 40.

40 is the new 20, right?

The picture above shows a valuable and appreciated birthday present I got from my sisters early November during the Power women weekend. This is a kind of mirror to me. I look at it and find all courage I need to continue this fight against stigma and for being a role model to other HIV positive people out there. My sisters wrote words of appreciation and encouragement that make me feel great:

Power Lady! Funny. Good dancer. Powerful. Happy woman. Source of inspiration. Humour. Strong and inspiring. Very proud of you, girl! Great to have met you!

All these words made me feel so great and they still do. I will continue to make a difference in this world and yes, I am looking forward to it! I choose to be visible and I am aiming to reach 100.

Happy 40th birthday to me! God bless us all!

25

11 2016

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.

Mary

09

11 2016

Stigma kills. Let’s kill stigma

by Eliane

eliane-voor-posidivas21st October was an unforgettable day for me. I got rewarded publicly for something a have done out of free will! I was granted the Inspirational Voice Award 2016.
Well, we all know that talking openly about HIV is not an easy job. We have to deal with persistent stigma in society. Now I was granted the award, I realize I have made a big step in letting my voice be heard, without thinking about the consequences! I am happy with this result. After receiving the Award on a special event in Almere, I was given the opportunity to speak in front of many Africans in diaspora and other people and celebrities invited for the event. It was very moving to see every person in the audience quiet and listening to what I had to say:

” I will speak out loud to you that I am the living proof that HIV is not a death sentence but a chronic health condition. I assure you that i am no longer a danger to anyone. My medication is effective and the virus in my blood is Undetectable, which means I am Un-infectious!
There are many of us living with HIV for many years. We have come to learn how to live with it positively.  However, there is still a social and psychological constraint and that is the Stigma. Why would you treat me differently? I am beautiful and you could not tell that I am HIV positive until I tell you.  You can never read it on people´s face. But because people easily jump to conclusions and express negative judgment on people with HIV, many of us keep hiding. It causes us stress and makes us feel miserable. We all know that stress is not good for our immune system.
I have lived with the virus for 13 years now and I am living a healthy life. I have given birth to healthy children since my diagnoses.  I call upon all of you: please do yourself a favour and get tested for HIV. Once you know your status come back to me and we will talk! Only when we all are tested and infections are treated, the spread of the virus stops with us!
In case you are tested HIV positive, I will listen to your story patiently and give you tips on how to live your life positively. It is important to take your medication daily and on time and to believe that they effectively support your health. They do! Look at me to believe they do. If you test negative, congratulations! And take precautions to keep it that way and please be supportive to people who are HIV positive. It could have been you – they are no different from you.
HIV has become a long term and manageable condition. We can live to an old age, to see our grandchildren get married. HIV does not take away our talents or knowledge. It does not have to stop us from following our dream.  In the end, we will all die, but HIV will not kill us unless we deny its existence.
If I would have followed my doctor’s advice 13 years ago when I was diagnosed, I would be sitting there, with my coffin next to my bed, waiting to die.
But I rejected all negatives things coming my way until today! I decided to live a positive life and I have many reasons to do so. I will be the voice for the Voiceless. I will fight stigma. I am asking all of you to walk by my side and to fight stigma on HIV together. Do no longer allow that people are killed because of the needless stigma which keeps them away from testing and treatment.  Make it known that good medication is there and that when our infection is treated we do not infect others. Would join me? Thank you, ladies, and gentlemen. `

After my speech, I received a big applause and many hugs I got a lot of compliments from different personalities. I can tell you I enjoyed it and how wonderful it feels to be heard and appreciated! I may have won this Voice Award but is not for me alone, I dedicate it to all STIGMA FIGHTERS.

Let us keep our light burning together. Yes, we can and will!!
Be blessed!
Eliane

 

31

10 2016

My fabulous weekend

by Eliane

elianeLast Sunday I was in the train on my way home, my eyes fixed to the screen of my smartphone, like many of us do in public transport. And elderly lady sat opposite me. She had a smartphone too. Her phone cover was bright pink with bling-bling.  Funny, I could just imagine her taste when she was a little girl.

A young woman with a camera entered the train. She introduced herself as a student, working on a project on people using phones in public transport. Taking pictures of them listening to music or checking Facebook or WhatsApp or playing games. She asked me if she could take my picture while looking at my smartphone, assuring me that only her teacher would see the pictures. Well, why not helping this young student preparing her future. So, I gave her permission and she took a picture.

Then she turned to the elderly lady with the same question. But this lady understood it as if she was supposed to pose in front of the camera. I explained her that she should keep her eyes fixed on her phone while the young lady takes her picture. She said: ”It is all new to me, I am learning how everything works!”  I encouraged her: “We are never too old to learn. Every day we learn new things in our lives.” She smiled at me and confirmed this! When the photographer finished, she showed the picture. The lady smiled again and said: “It is nice, I like it!”

We continued our conversation and she shared with us how lonely and unhappy she feels after losing her daughter three years ago because of cancer. ”My daughter probably thinks I am having fun, from where she is now.” I sympathized with her. My sister died of cancer and it took me a long time to let it go. I could really feel the pain the lady was going through. The photographer and I were both listening to her. The photographer had no words and visibly felt awkward. It was heavy for her.

I told the elderly lady that wherever her daughter may be, she would not like to see her mother unhappy, or sad. She would love her to continue celebrating life. I was talking from the bottom of my heart. I lost my sister 3 years ago and it hurt so much, but I have a special place for her in my heart now. It is awful to lose a child and it is equally awful losing a mother a very young age, like it happened to me. I am a grown up now, I use my mother’s wisdom. In our lives we lose people we love and a new generation stands up. We all know this is the path we will travel someday. That is why it is so important to live our lives to the full, but without forgetting the ones we lost. “Give your daughter a special place in your heart, she will be happy.” The old lady smiled: “You are a wise woman, thank you!

Next stop she got off the train after giving me a hug.

The photographer said: “You did well to comfort her!” I told her that she did as well, being a good listener. We both listened to her story attentively. Somehow I felt that telling her something about my life experience could help at that moment. We continued talking and I shared that this kind of listening was one of the exercises I did today in my training on peer-to-peer counselling. She was interested to hear more, so I told her that I am HIV positive I am in a training so that I can support someone who just heard that he or she is HIV positive, by sharing my life experience with HIV. She looked at me in surprise and said “Really? I would have not known if you did not tell me.”

She asked where I do this training and I told her about the Hiv Vereniging. I also explained that there are only a few people I know that speak openly about having HIV because of the stigma around it! I pointed her at the website hivuitdekast for more stories about people living with HIV. When she got off the train she thanked me for information and also for helping her with her project. We exchanged numbers and will keep in touch.

We can only fight stigma when we choose to be visible. People then won’t have a word to say because we look fabulous! These were great moments in the train topping up an already great weekend. First I spent an evening and night in the Citizen Hotel Schiphol with my husband before he travelled to Lebanon. On Sunday morning I was full of energy to go to Hiv Vereniging for the training peer-to peer counselling. We were twelve people from different backgrounds. What an inspirational day that was and already I look forward to our second day of training. And then this beautiful encounter in the train.

I had a fabulous weekend.

05

10 2016

I am a warrior

by Eliane

For being a warrior there is no need to be in a war of guns and fight until you win.

Eliane warriorI have been in many different wars with and without gunfire. I am still fighting in one long lasting war, which I call the “STIGMA WAR”. I am a warrior in the war against stigma, discrimination and ignorance about HIV. In this war I am breaking the silence, the shame about being HIV positive and I am ready to win this war, because I fight it with passion and compassion.

Yes, I am a warrior in this life full of challenges. Feeling pity for myself, hating my life would not have made me feel better. When you love life, life will certainly love you back! So I choose to do what is best for my life. Breaking the silence, fighting for my rights was the best thing I could do. And I continue to do so. Please join me in this war against STIGMA and DISCRIMINATION. We will win. Let us put our energy together and break the silence. Let us speak out and loud. Let our voices be heard!

This life with HIV has many challenges. It is like the weather: there are rainy days, cold days, warm days and you adapt to any weather condition. It is the same when living a positive life. In any possible situation we have to find a suitable solution. If I turn around and look back at all situations I have been though, I clearly see that I am a warrior. And I am not afraid to die in this fight, I am not afraid of what people may say or how they may treat me. I broke the silence. And in the end the victory is on my side.

At this particular moment I just want to breathe my emotions.
I just want to smile like the warm sun.
I just want to laugh all day like running water in a river.
I just want to share my victory with the world.
Forget about the time I used to cry like summer rain.
Forget about the time I could not choose between right and wrong.
Forget about the time I was silent because of fear for being hurt.
Forget it. It is over now; I just want to breathe my emotions!
From now on I will joyfully sing like a morning bird.
So that people all over the world hear my voice saying:
“Hey you, stop the stigma!”
I am a warrior in a war without guns.
With a positive mind.

07

07 2016