Archive for the ‘nee tegen stigma’Category

Ik ben Linda, ik ben niet hiv. (Vrouwkracht 2018)

door Linda

“Ik ben Linda, ik ben niet hiv!” “Ik heb hiv en God houdt van mij.”
Dit zijn o.a. bemoedigingen die ik kreeg vanuit het Vrouwkracht weekend!

Maar het mooiste is, dat door dit weekend en de liefde, kracht en duizend armen om me heen, mijn zelfvertrouwen een flinke boost heeft gekregen!
We hebben heerlijk gedanst, gezongen en hele persoonlijke, intense gesprekken gehad. Ik was na mijn hiv-diagnose (juni 2015) ook niet echt meer op vakantie of weekendjes weg geweest. Dit weekend voelde ik me dan ook echt weer even gewoon helemaal Linda. Ik hoefde met niet te verantwoorden aan mijn omgeving dat ik niet gelijk dood ga als ik bijvoorbeeld hoest of nies ik dan niet gelijk dood ga. Of uit te leggen dat als ik diarree heb, de werking van de medicijnen niet verminderd. Dit weekend voelde ik me echt begrepen door de dames en wat waren/zijn zij een enorme troost voor mij. Dank jullie wel hiervoor, lieve zusters!!!

Na het weekend heb ik heel veel aan de n=n boodschap gehad. Ik krijg een aantal keren in de week ambulante begeleiding thuis, ter ondersteuning in mijn dagelijks leven. Toen de begeleider op maandag na het Vrouwkracht vroeg hoe ik het had gehad, liet ik mijn goodie-bag zien, met de tekst op het tasje ”niet meetbaar = niet overdraagbaar, als het virus niet meetbaar is, draag je hiv niet over.” De begeleider vroeg of hij daar een foto van mocht maken voor in mijn rapportage en hij zei dat hij mij echt sterker vond geworden! Uiteraard heb ik hem dan ook toestemming gegeven om er een foto van te maken, want hoe meer mensen bekend worden met de n=n boodschap, hoe minder stigma!

Lieve zussen, nogmaals ontzettend bedankt voor dit geweldige weekend!!
Hopelijk tot volgend jaar?! (wel in een warmer seizoen… hihi!)

xxx Linda.


03 2018

De kracht van ontmoeting – Vrouwenmiddag in het ziekenhuis


Gisteren mijn eerste meeting met andere zusters gehad op een vrouwenmiddag in het behandelcentrum in Enschede.

Ik kan wel zeggen dat mijn houding tegenover de ziekte maar ook tegenover mezelf is veranderd en zeker in positieve zin! Dus ik ben echt positief over deze ontmoeting.

Ook direct vanochtend toen een vriendin haar fiets bij mij kwam ophalen heb ik het haar verteld. En dat zonder om de hete brij heen te draaien… gewoon met de deur in huis gevallen. Haar antwoord was… “oh oké… “

En dat was het! Bedankt zusters!

Na de meeting van gisteren nog gezellig koffie wezen drinken met mijn nieuwe zuster die ik daar ontmoet had.



04 2017

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

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


01 2017

De artsen van de toekomst

door Sabine

drhouseVan mijn verpleegkundig specialist Robin Ackens kreeg ik vraag of ik wilde meewerken aan een avond over hiv voor studenten geneeskunde van de universiteit van Maastricht. Ik zou worden geïnterviewd en mijn aandeel in het college zou zijn dat ik vertelde over de impact van hiv op mijn leven. Natuurlijk hoefde ik niet lang na te denken. Het leek me spannend, maar ook erg leuk! Ik heb van professionals zoveel stigma ervaren dat ik graag iedere kans aangrijp om mensen in de zorg – en zeker zij die daarvoor nog leren – op het juiste been te zetten. Er is nog een hoop werk te doen op dat gebied.

Gisteravond was het dan zo ver. Studievereniging IFMSA-Maastricht organiseerde een Dr. House avond over hiv en aids. De zaal zat tjokvol met 100 studenten geneeskunde. Pffff, het zweet brak me uit!

De avond was echt leuk opgezet. Er werd een lekker theatrale Amerikaanse uitzending van Dr. House getoond waarin een patiënt behalve hiv nog allerlei andere klachten heeft. In deze serie is Dr. House altijd de arts waar de echte moeilijke gevallen naartoe gaan. Na veel onderzoeken en out-of-the box denken heeft hij het uiteindelijk bij het rechte eind als hij een diagnose stelt. Maar daar gaat wel van alles aan onderzoeken en hypotheses aan vooraf.  Tijdens de onderzoeken naar de oorzaak van de klachten en het toewerken naar een diagnose passeerde van alles de revue, waaronder een spatincident met geïnfecteerd bloed in het oog van de verpleegkundige. Dat leidde tot vliegende paniek in de serie en ook tot geroezemoes en opmerkingen uit de zaal met studenten.

Het beeld werd een aantal keer stopgezet.  Internist-infectioloog Dirk Posthouwer legde dan uit hoe hiv de cel binnenkomt en zich vermenigvuldigt, wat CD4 cellen zijn en wat hun functie is, wat viral load is, welke medicatie er is en hoe die werkt, risico’s op overdracht en nog meer moeilijke maar interessante medische termen die ik nu alweer vergeten ben.

Na het zien van de aflevering en de medische uitleg door de internist was het tijd voor de realiteit van alledag en leven met hiv in Nederland. Robin interviewde mij hoe het leven na een hiv-diagnose eigenlijk is. Hij had me ter voorbereiding al een hele lijst vragen gestuurd, dus ik wist wat er kwam:
Hoe ben ik erachter gekomen, hoe gaat de behandeling in zijn werk, hoe is het om te leven met hiv, enzovoort. Maar ook vroeg hij of er in Nederland stigma ervaren wordt, en wat ik wilde meegeven aan studenten. Ik heb een aantal onaangename ervaringen genoemd die ik zelf en mijn partner hebben meegemaakt, maar ook heb ik voorbeelden uit onze community aangedragen.

Wat dacht je ervan dat mijn partner naar de huisarts gaat voor een uitgebreide soa en hiv test en dat de huisarts hem dan plompverloren vraagt of hij wel zeker weet dat hij een relatie wil met iemand die hivpositief is? Of kwetsende opmerkingen toen de MH17 neerstortte, “omdat daar veel mensen inzaten die ervoor zorgden dat onze zorgpremie zo hoog is. Opgeruimd staat netjes”. Ik kon voorbeelden geven die het voor de studenten echt deed leven hoe naar het moet zijn om dit zelf mee te maken.  Ik heb hen, de artsen van de toekomst, kunnen meegeven dat dit soort dingen echt onnodig pijn doen en veel verdriet veroorzaken. En dat het door dit soort ervaringen nog lastiger wordt om open te zijn over hiv.

Maar wat ik hen vooral wilde meegeven is dat wij, net als zij, gewoon mensen zijn. Dat zij ons als zorgprofessional moeten behandelen en begeleiden zoals ook zij behandeld en begeleid willen worden. Dat we een mond hebben, dat we kunnen praten, en dat wij het veel fijner vinden om een paar vragen zelf te beantwoorden dan dat er over het antwoord gespeculeerd wordt, gevoed door onwetendheid of vooroordelen.

Dat kwam aan. Door de vele vragen en reacties uit de zaal werd mij duidelijk dat mijn boodschap was overgekomen. En ja, ik vond het doodeng, maar wat ben ik blij dat ik deze kans gegrepen heb!


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!


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!



10 2016