Tag: HIV positive women

Golden goal

hivstigmafighter

My lovely people , January is my favourite month. Not only because it is the beginning of a New year where we can start afresh, we also still have the whole year ahead to work on whatever we set our mind to.

We definitely started afresh as on the  4th January we celebrated our 20th Anniversary in a very special way. It became a great day full of many surprises. Remember, I was back from Burundi where I had been working really hard for 3 months on various great projects. So of course, I made sure to be back on time in the Netherlands to be with my husband on our 20th anniversary.

He is such a romantic man, as he had planned some wonderful surprises for our special day. He took me to our favourite town, Rotterdam, where we stayed in an amazing hotel with a room with our own private jacuzzi and sauna! Then we went to a special place, a huge red heart along a canal in Rotterdam, where love couples lock in their commitment to each other. So on our wedding day (04/01/2023) we locked in our 20 years and committed to staying strong for another 20 years.

And some of you may remember that it is only two years ago when I started to work hard on a Healthy New Me and that my goal was to wear my wedding dress on our 20th wedding anniversary? To accomplish this I started to walk at least 10 km every day. Well, I am so proud to share with you that I reached my goal! The dress fit me perfectly. I am calling this my Golden goal!

So, what is my next big motivation? Still this month I was invited by Positive Now and HIV Ireland to the 4th National HIV Conference in Dublin, Ireland. The theme was “The Pillars of Wellbeing” and the first speaker was Prof. Paddy Mallon to update us on key topics related to HIV in 2023 and explain where we are and what we need to know. He explained about the HIV lifecycle and presented an update on injectable HIV medication. In the Netherlands we are a bit advanced on this topic as we already have people using this, so I could share some of the experiences from our community with the Irish HIV community. To the Irish participants he asked  for more people to participate in clinical trials.

The second part of conference was focused on Wellbeing. This involved topics such as how to improve our wellbeing, how do mindfulness and meditation, how to break a bad habit and apply a new habit. My favourite exercise was the ‘domino effect’ where we learned how by starting to change something small you will be able to end up reaching your bigger target. We were also asked to write down our goals for 2023.

So after a successful 2022 where more a ‘ healthy new me’ resulted in more fitness, weight control and even less medication intake (you see, A small domino can really knock over a bigger one!), what is my golden goal for 2023 and beyond? Positive Living!

I really want to keep my healthy new me lifestyle, and also to fiercely engage on HIV activism as a performer.

I would like to thank PositiveNow and HIV Ireland  and every person I managed to chat with in Ireland. Thanks to joining conferences and networks like this I am motivated to continue to be healthy and in Love for the next 20 years, and by the time I will be 66 years I want my wedding dress to fit me again! 

I am so excited! Isn’t this what I should call Positive Living?

Peace,

Eliane

A bouquet of problems

hivstigmafighter

My birthday month, November, had a great start by doing what I like most, giving my HIV activism a boost. Between 4-7 November I was in Istanbul for a face-to-face ‘Skills Training to Empower Patients’ (STEP-UP) and networking weekend organized by the European AIDS Treatment Group (EATG) Training Academy.

After more than a year of online training because of Covid 19, I got a chance to finally meet my fellow European and Asian HIV activists and advocates. Everyone was dying to meet and finally get to know each other more and share our experiences because in the end it is really about community voices. It was quite interesting to experience the difference between zoom meetings and ‘real’ talks together.

As we all came from different parts of Europe and Central Asia we had to speak different languages, so some were speaking English and others Russian. But in the end we all share the same goal and then language barriers can be overcome. While chatting with different people and listening to presentations, I realized that we all share what I call a “Bouquet of problems”;  Stigma, discrimination and criminalization.

During the weekend I learnt so many new insights. For example, my friends from Greece and Georgia shared with us that among people using drugs, women are way more stigmatised than men. Or that in some countries mothers living with HIV are still criminalised when breastfeeding and that they are not receiving any support from the health system to obtain baby formula or do medical checks during their breastfeeding period. 

Yet, all the new information led me to ask so many questions. For example, why are especially women still so vulnerable to attack and deliberate stigmatision? There are so many new developments and guidelines, for example on breastfeeding, there is U=U, etc. In 2021, women living with hiv should not be criminalised at all. I am telling you, no mother would wish to transmit HIV to her child on purpose!  

It shocked me to hear that there are still 130 (!) countries where people living with HIV are injustly criminalised, and in 50 countries we can be prosecuted because they have outdated laws related to sexual, but also on spitting, biting and even breastfeeding. People, after 40 years of HIV/AIDS, instead of being stigmatised we must focus our fight on removing inequalities and to demand the right to access HIV treatment and receive good medical care.

Our training was epic, there was no taboo, we talked about many topics and received useful tools that we can use in our communities. It feels like I have known this group for such a long time as we shared so many laughs, jokes and fun. It made me wonder what more we could have achieved if we could have done all sessions face-to-face instead of via zoom. I gained so many friends, which is fantastic. These moments of togetherness bring back humanity to our lives.

By Sunday, we all went back home empowered with knowledge that we will share with our community and use to convince our decision-makers and politicians to DECRIMINALISE people living with HIV!

Thank you EATG for organising the STEP-UP training and making this such an inspiring weekend, we shall meet again my Activist Friends. Keep up the fight, we are on the winning side since we DARE to speak up about our bouquet of problems!

Peace,

Eliane 

Ageing positively

hivstigmafighter

As a woman and mother living with HIV how do I see ageing?

A lot of people are afraid of ageing, yet for me it is a very exciting journey and I am actually looking forward to getting older! So, let me share with you why I see ageing in a positive way.

The whole of my adult life, only based on my appearance, people often assume I am still very young. This despite my double trouble of HIV and diabetes. In my life this has led to many embarrasing situations.

When I took my first born for her first vaccination to the clinic 20 years ago, the nurse told me to call my mother. When I told her that I was the mother of my daughter, she yelled at me ”Listen girl, don’t play with me. Call your mother, we need to ask her some questions”. This made me very sad as it reminded me of my mother who died two years earlier. So, with tears in my eyes I responded that “I AM the mom”. When she started hitting me I took out a breast, squished it and made the milk jump unto her. Calmly, I said, “Do you believe me now?” With her guilty face, not even apologizing, she finally started vaccinating my baby. That was the first time I really wanted to age and look like a mother to the people around me.

Three years later, another story happened on the 14th of February 2004 during my husband’s birthday in Luanda, Angola. We invited friends to celebrate with us at a local disco. Everyone was allowed to enter, except me! The bouncer said “You are a ‘quatorzinha’ (14 year old), you can’t enter here!” Everybody started defending me saying I am 26, married and a mother. So when we were about to leave by car, our Angolan driver greeted us and called me “boss, please get in”. The bouncer asked him if he knew me and he replied that we are a married couple. Finally the bouncer believed me, apologized and let us in. I really wanted to celebrate in this place as dancing can lift my spirit! In no time I was already back in a good mood to forget all the drama of being called a quatorzinha.

Since then there were countless times I have been mistaken for my age, hoping that when I reach 40+ things will change. But even as recent as last week, when I wanted to buy a bottle of wine in a supermarket, I still was asked to show my ID by two employees to prove I was older than 18! I told them to look deeper, that I was older than that. But they would not believe me and that without showing my ID they were not going to give me the bottle. Luckily, I had my passport with me. You should have seen their face when I showed it and when they read I am 45! They apologized and said “We are so sorry you look too young for your age!”

Over the years I have learned from these stories that instead of feeling insulted by people that misjudge my age just by looks, I should accept it as a compliment. So these days, I smile at these embarrasing yet funny moments rather than becoming angry like I used to in the past.

What is my ‘secret’ to ageing? I firmly believe that taking good care of my body and mind has a huge positive effect. I am staying in shape by walking everyday 10+ km, I love performing on stage, I am always trying to be happy when I am at home by singing and laughing out loud. This positive take on life must help I guess. And the added benefit is that I am still reducing my diabetes medication intake!

So ageing does not bother me at all. The fact that my ‘looks’ apparently do not match my age is something I now embrace rather than fight! What matters most is that while I am ageing, I also become more fulfilled, happy and healthy!

Peace,

Eliane

I want the world to know

hivstigmafighter

In May 2014 I finally told my secret; I published a note called ”The Hidden truth” on facebook to inform everyone about my HIV. I had been thinking about coming out of the closet for many years and that day I was ready to share my reality and prepared to face a storm of reactions.

Before coming out I told a few friends, neighbours and parents of my kid’s friends. Why did I do that? I was creating my small safe haven, in case the world would turn its back on me. So I was assured that these people would hold my hand and support me! 

Back then I was not sure what reaction I would be getting, but in the end I received a lot of supportive responses. Some people called me, others wrote messages calling me a strong and courageous woman, thanking me for sharing, telling me they love me, and reassuring me I would still be the great dancer and remain who I was.

Then Hello Gorgeous, a Magazine for people living with HIV, approached me if I wanted to share my story as a HIV talent. So in the 2014 autumn edition I became a cover girl for that magazine. I decided to use the magazine cover as my facebook profile picture.

This is when the troubles at my kids’ primary school started;  a parent went to tell the director of my HIV. He asked me to remove the picture, he said ”You scare the parents!”. I told him that if parents have questions, they are welcome to ask me. I added that I could change my facebook profile picture but that the truth would still be out there, in the magazine and online!

That’s when I handed him a copy of the magazine. He looked inside and saw me posing with my Indonongo and said ”You look happy and strong!” I said “That’s exactly my point! Have you ever seen me unhappy? I came to this school with HIV but I did not tell you. There are other parents with secrets as well. I am out of the closet and please don’t tell me to hide again!”

But some parents did not give up yet! A few days later a teacher told me “Mrs Becks, I am sorry to tell you that parents are very worried that your son is going to infect the whole classroom”. I was furious and asked “ Are you seriously thinking that my son is going to infect your classroom including yourself?”

To my surprise he answered that he was afraid that was going to happen. So I told him that first of all he does not have HIV and secondly even if he would have it, how is he going to transmit it to you and the other kids? Is he going to have sex with you all, is he going to breastfeed you or is he going to inject drugs and share a needle with you? By now he was begging me not to be angry, and said he needed to ask this so he could answer those parents.

I was like, well you got your answer. But since it is HIV you are trying to push me and my children down. I will NOT allow it! Tell those parents, whoever has a question, to come to me and we will talk. Shame on you as teacher, not making an effort to look for basic information on HIV. And you are hiding behind the parents while you are afraid yourself.

You all thought this would be the end of it, right? Well, things just got started… Very soon after this, teachers started reporting to us that one kid was suicidal and the other was uncontrollable and was continuously hitting other children. So all of a sudden they had mental issues? But as the school already reported this to the social care system, we were now labeled a dysfunctional family thanks to this school. This unleashed an army of social care ‘specialists’ towards us. I can tell you, there is no way to keep them out of your door and you are guilty until proven innocent!

So, we went through a very stressful period of observations by psychologists, dozens of talks with social caregivers, and hundreds of forms/ tests to fill in. All this to discover if my husband and I were evil. Guess what? They found nothing! And all we got from the school was a simple apology for the misunderstanding…

I felt really down for suddenly being treated as a bad mother, whilst I have always been so active for the school helping them out with many activities including making music. The moment I came out, all went down the drain! That period in 2014 I had to stand tall and fight tooth and nail against this bigotry. But I showed them that no matter what kind of box they tried to force me into, I did not fit!

My secret was out, and nothing was going to stop me now! Luckily my safe haven did its work. Of course, some parents were fully understanding and to date my kids are friends with many of their children.

It is not easy to fight stigma and discrimination, and when it comes to my children I will do anything to protect them. In the end the drama caused by school and the army of caregivers stopped and we walked free after our long fight!

I am glad I came out and I did not regret my decision!

Peace,

Eliane

Healthy New Me

Healthy New Me

hivstigmafighter

You may wonder why I chose this title? And why I believe this will be my 2021 slogan?

As I shared in roller coaster, as a long term diabetes survivor, I have been dealing with many health challenges alongside HIV during the difficult year 2020. Most of that year I also suffered heavy menstruation, related drops in my iron level and anemia. Because of this I could not exercise regularly, losing confidence when doing simple things like walking or cycling. Sometimes I thought I was about to have a heart attack!

So I gave up the only sport I really enjoyed before Corona came into our world. Do you know what it is? WALKING. Before these health issues I would walk 5 to 7 km daily and 15 km once per week. I liked walking, being in the nature, smelling fresh air and giving me inspiration.

I became really unhappy about my health and I started fantasizing about walking on the road again and wishing that I got rid of the extra weight gained. And on top of that, my diabetes became worse and I needed to increase my medication which was already a lot.

When they told me that I would finally be helped with my bleeding problem, I could not wait to get on the operation table to get control over my life back. Before I entered surgery on 19/11/2020, I promised myself that if I would come back safely and start walking everyday the moment I would be allowed to exercise again.

So, the day after I got the green light from the hospital, I kept my promise and started walking again. I set myself two goals: 1) Get rid of the extra diabetes tablets and 2) reduce weight so I can fit my wedding dress again. Every single day since the green light, I walked at least 10 km and I increased it to at least 15 km per day during the weekends!

Two weeks into my push to regain my health and confidence, I got my first check-up with my diabetes doctor since my surgery. She was very surprised when the results came in, asking me “What did you do to make your diabetes go down so quickly?” I said “walking 10-15 km everyday”. So she told me that I could immediately reduce the number of tablets and that if I would continue to improve, I could even take less.

I was so happy to see the immediate positive result of my hard work and that I am already on my way to achieve my first goal. I can’t wait for the day I am ready to find my wedding dress and start trying if it fits!

Achieving these positive results, makes me more motivated than ever! I am losing my weight, I am gaining more energy, my sex is great, and my husband is happy 🙂

I love the Healthy New Me, with a positive mind doing positive walks.

Peace,

Eliane

De volgende generatie

hivstigmafighter

Ik blijf me steeds beter voelen sinds ik open sta over mijn hiv voor mijn kinderen. Zaterdag was ik uitgenodigd voor HIV-positieve vrouwenactiviteiten in Sittard. Moeders mochten hun kinderen meenemen. Ik dacht dat het iets zou zijn voor heel jonge kinderen van 0 tot 8. Ik vroeg of het oke was om mijn jongste zoon van 10 te brengen. Natuurlijk is hij welkom, was het het antwoord. Dus was het mijn beurt om met mijn zoon Akira te overleggen of hij geïnteresseerd was om met mij mee te doen.

Hij had 3 keuzes:

  • De eerst was om met zijn grote broer Rio en zijn vader om te gaan trainen in de Lage Zwaluwe
  • De tweede keuze was om te gaan spelen met zijn vriend
  • En de derde was om zich bij mama aan te sluiten bij de hiv-activiteiten voor vrouwen.

Raad eens wat hij koos? Hij wilde met mij meegaan. Ik vroeg hem of hij zeker is om naar Sittard te gaan, 2 uur in een trein te zitten en deel te nemen aan de buikdans. Zijn antwoord was: “Mama, ik wil je ondersteunen bij veel dingen die je doet met het bestrijden van stigma. Ik schaam me niet dat ik in het openbaar om je heen ben, jij bent mijn moeder en mijn mooiste en moedigste moeder die ik ooit heb gezien in mijn hele leven “.

Nou niet dat hij heel oud is … slechts 10 jaar. Maar dit bracht tranen op mijn wangen. Toen vroeg hij: “Mam, ben je aan het huilen? Heb ik iets verdrietigs gezegd of heb ik je beledigd? “Ik zei:” nee mijn liefste, dit zijn tranen van vreugde “. Ik weet dat alle energie die ik in dit gevecht stop niet voor niets zal zijn, want zelfs als ik niet in staat zal zijn om verder te gaan, zal je oppakken wat er nog over was.

Dus gingen we met onze trein naar Sittard. We hebben geweldige mensen ontmoet, ik had een leuk gesprek.  Sommige vrouwen kenden me alleen via mijn Facebook-positieve berichten. Sommigen hadden mijn verhalen gelezen op Hello gorgeous en waren zo blij om elkaar persoonlijk te ontmoeten. Dus omhelsden we elkaar en lachten we samen. Wat gebeurde er met mijn zoon Akira?

Wel, hij heeft al 3 kinderen ontmoet die hij kende tijdens het Positive Kids Family weekend. Dus ze waren samen aan het spelen, en soms kwam hij langs en gaf me dat ‘ik hou van je moeder kus’ en ik zou hem en andere kinderen horen piano spelen.

Ik was opgewonden om de buikdans te doen. Het is iets heel anders dan de Afrikaanse dans die ik als een professionele danser gewend ben te doen. Ik keek ernaar uit om het samen met positieve vrouwen te leren en contact te maken zoals ik altijd doe wanneer ik dans.

Wat een geweldige dag, ik heb genoten van elke minuut. De kinderen waren net als hun moeders gekleed in een buikdansuitrusting. Ik dacht dat Akira misschien niet mee zou doen of de outfit zou aantrekken. Het bleek dat hij er veel plezier mee had. Hij vindt het leuk om te dansen, denk ik, iets dat hij van mij heeft geërft. Hahahaha.

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We hebben een leuke tijd samen gehad. Na de dans aten lekkere oosterse hapjes en toen gingen we naar huis.

Tot nu toe heb ik er geen spijt van mijn kinderen over mijn hiv-status te hebben verteld of Akira met mij in de vrouwengroep te laten doen, omdat ik geloof dat wanneer we de jonge generatie sterker maken we een kans hebben om het hiv-stigma te bestrijden en infecties te verminderen.

Eliane