Me and my meds

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Travelling is always exciting until you remember what has to be done before leaving your home!

My lovely people, in your life there are always moments you need to travel from your home, whether this is for family visits, holidays or work related. We are all travellers.

We do not leave our medical conditions at home, we are traveling together, and so is our medication. So, when you know your travel dates, what is the first thing that comes to your mind? Is it the excitement of packing your bag, check your outfits, mesmerising over the things to do when you arrive?

My first thing is to check if I have all my medication, and here comes the hardship. When you take only 1 pill a day it is easy to count what you need. But imagine when you live with co-mobidities and you have 4, 5 or more medications to prepare? And if you will be gone for a month or longer?

This is not easy, but it is my reality. I do this many times a year, so I developed a certain routine, especially when I go for a longer period. First of all, I always make sure to memorise the looks, shapes and colours of my meds, I even know the size and colors of the packages. That way I know what I take and what I need for my travel. And I am blessed for not taking so many pills anymore since my Healthy new Me lifestyle. Then, once I know that I will be traveling, I will call my pharmacy well in advance and ask them to provide me with a stock of at least 3 months of meds.

Here in the Netherlands, a few days later I will get an email that my meds are ready for pick-up. Then I will go as soon possible to pick them up and do a very careful check at home. Because, although they said everything is ready, my experience has taught me that they sometimes substitute med for another med with maybe the same function but from another brand and composition.

Unfortunately, many times I need to go back to the pharmacy to sort out what happened. And often I get the same response, that a certain type of pill is not available and that it will take a very long time to deliver and that they decided for me to take an alternative.

To be honest with the pharmacy, I cannot even blame them too much because they are actually instructed by insurance companies to prescribe alternatives because the insurers refuse to pay for certain brands as they are more expensive. But the thing is the pharmacy doesn’t inform me about this change beforehand. And I tell you, this changing of meds without informing me has already gotten me in trouble a couple of times as some of the alternative meds gave me all sorts of allergic reactions!

So today I am preparing my journey, and again I realize that meds are missing. I finished to check in with them just now, only to hear that it is not available and it will take many weeks to be delivered. As usual they proposed an altenative, but luckily I already know I am allergic to these meds and was pretty sick for a few weeks when I took it the first time a few years ago. So I totally panicked because I must take this medication to regulate my blood pressure. The pharmacy now did their search and came up with an alternative. As it literally takes weeks I now must take this new meds and I can only hope there will not be any serious reactions while I am travelling!

It does worry me sometimes how often I need to stand between the pharmacy, health insurers and my healthcare providers, to make sure they make the right decisions around my medication. Memorising names and apperance of medication and counting doses can be a pain in ass when you are doing it a lot, and there might come a day that I can’t do it anymore. What will happen then? I am sure I will find a solution. Time alone will tell and with my positive spirit nothing is impossible!

Being an avid traveller, I do have extra exercice and motivation to stay adherent and loyal to my medication. Otherwise, how can I enjoy holidays or work abroad when I am not healthy?

My dear person dealing with double trouble (or even more) morbidities, don’t think of winding down or discoving new places before dealing with the pharmacy and insurers for your med. Prepare them well in advance, don’t forget to take your medical passport and make sure to check the time zone of the country you are visiting to adjust your medication schedule.

Those are things I always checks before I start my travel.

Me and and my meds are inseparable!

Peace,

Eliane

Invest in women

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My lovely people how have you been? I was visiting my beloved country in January and part of February this year. While visiting many places and interacting with many people, I realized the incredibly important place that women have in Burundian society.

We contribute so much to society; Early morning, even before breakfast time, women can already be found on the lands as farmers and when they are finished they will be making breakfast for their family. Just imagine, while for many of us the day hasn’t even started, many women in Burundi have already worked for three hours or more!

Walking the streets and markets of Burundi you will notice that most street sellers or market stall owners are women. They work hard to sell fruits, vegetables, fish, clothes, etc. They sell hair extensions on the streets and apply them to customers. While working, they will often take care of their kids, holding them on their backs or allowing them to play on the street.

Jeanine selling porridge

Meet Jeanine, a cheerful woman of Gihanga, selling porridge on the street. While enjoying her porridge I had an opportunity to chat with her, so I asked why she sells porridge at the end of the day instead of the morning when most of us eat our porridge. She replied that during daytime she is working on the fields as a farmer. Then, at the end of the day she makes time to sell her porridge to people who cannot afford to eat in a restaurant.

Renata is another great example of how a women contribute to a healthy society. In my hometown Gihanga access to clean water has been a problem for ages, even when I was young! Many women and girls walk or cycle for over 8 kilometres to fetch clean water for their family to drink. So, Renata was just starting her cycling journey, taking 6 containers of 20 litres each with her, while also taking her baby on her back. It does not matter how far or whether it is a hot or rainy day, this is what she must do to keep her family healthy.

Renata on her way to fetch water

And if you think that Jeanine and Renata can wind down after a hard day of work, do not forget they will also be cooking meals for their family or selling a few small things in front of their doorsteps in the evening. They are real centipedes (maboko igihumbi in my language). Women like Jeanine and Renata understand the important role of women in Burundian society. They know their contribution to maintain a healthy and resilient family is essential.

Evangeline Ngendakumana from BAWA

With International women’s Day around the corner, another shining star woman that I want to praise for her courage and dedication to fight for the rights of vulnerable women in Burundi is Evangeline Ngendakumana, the Executive Director of BAWA (Burundian Association for Women in Action). You can read more about the great work of BAWA, including on health & HIV prevention, in my previous blog. Always working hard to support so many vulnerable women and forge their equality in Burundi, she and her team are a truly great example of why we should accelerate investing in women like Evangeline and grassroots organisations working on women’s health & HIV prevention like BAWA.

Eric the Dragking

Lastly, as a Burundian woman myself, I hope I am also proudly contributing to empowering Burundian women and forging equality through my drag art as Eric the Dragking. Burundian women have many talents and we don’t need to stick to those men determine us to do. 23 years ago when I played the indonongo, a traditional instrument, as the first woman ever, I was told that it was only meant to be played by men. Today it has become normal for women to play the indonongo. We can do many things, the world is out there, let us discover it.

To those Burundians women who try to make a difference in our country and work hard for their families and contribute to Burundi’s economy, I salute you!

If you want to see some more women of Burundi contributing to a healthy society scroll down below for a slideshow…

Peace,

The proud Burundian,

Eliane

Put women first!

hivstigmafighter

My lovely people,

The talk of ending HIV and AIDS has been going for ages, are we really going to end HIV and AIDS by 2030? To answer this question, we must ask ourselves what actions do we take in our HIV community to put people first? And more importantly, are we making sure to put women in charge?

There is always this inequality. We point it out, we are all aware of it, but concrete actions are hardly noticed. It seems that women are always the last to be thought about while their vulnerability around HIV is so visible. Yet, often we remain silent, indifferent. When will women be saved from this suffering of inequality? When will they not only be spoken about but also put in charge of addressing their challenges related to HIV and AIDS?

This January I am in my home country, Burundi, and my heart is broken when I talk to women in the communities. For example when I talk to a mother with child abandoned by the father, homeless women with children, or young girls begging on the street. Many of these women have no means or support network to take care of themselves and their children.

Put women in charge of HIV response!

Some women resort to becoming a sex worker. This is not without danger, many of them are still sleeping on the streets and through their profession or whilst living on the streets there is a high chance of them being raped. Some told me that happens at least 3 times per week!

The rights of these women are being violated and need to be supported. No wonder it makes me angry when we shamelessly announce we want to end HIV and AIDS in 2030 while basic rights and needs of these women are not even met yet, or when there is no plan of making PrEP available as a preventive strategy to help these women to protect themselves from HIV. Where are our HIV allies when we need them most?

This month my focus is to initiate the strengthening of community-based groups working with vulnerable women to increase their awareness about health & HIV services and PrEP as a life-saving measure for HIV prevention and stigma reduction.

To make a lasting impact we must work directly with local actors, so I have teamed up with a local organisation called BAWA (Burundian Association for Women in Action). The first thing we did was to make sure we listen. We must understand the societal challenges the women face on a daily basis. And my goodness, they are many!

Many women reported they face domestic violence, some sex workers end up with pregnancy during their work and experience problems to register their children as sometimes they are arrested and have their IDs taken, women sleep on the streets without mosquito nets and suffer from malaria and since they are not registered they cannot get mosquito nets, some are being detained by police and taken to the countryside where they live in places without services, etc. It is very shocking. All of them came to the same conclusion, we need safety and protection!

Distributing condoms

Having talked about these challenges and how they affect their lives, we moved to listening to their ideas about how to improve their situation. And it became so apparent to me that they have really great ideas about how they can create a better future for themselves. For example, many women would wish to have access to PrEP or be able to protect themselves for example through condoms.

As BAWA works together with others to address the needs of these vulnerable women, we also organised a session together with them to interact with the women of BAWA. We discussed their strategies on how women can stay healthy & safe, and how to seek help when needed. This was also a great opportunity for me to share the latest on HIV prevention and treatment. So, I shared with them a whole range of preventive measures such as the dapivirine vaginal ring , PrEP pill or injectable PrEP. This is a part of the world where I clearly see the need for injectable PrEP as this will positively impact upon the health of vulnerable women. We were also able to make female and male condoms available, and most strongly preferred female condoms because they are a better means for them to protect themselves.

As is customary in our society, to end these fruitful sessions and collaborations in the Burundian grassroots (HIV) community we shared a great lunch together!

If we do not work with organisations such as BAWA and the vulnerable women they represent directly, ending HIV and AIDS by 2030 is an illusion! So, HIV allies pay attention, let’s make 2024 the year to get the balance right and make sure we address the challenges of women in the global South in our fight against HIV and AIDS.

Peace, Eliane

The BAWA support team

Heart

hivstigmafighter

My lovey people,

Many of you know that I love writing poems and that I have posted a whole series of them over time. Getting closer to 2024 is a great moment to use a poem to reflect and to compliment ourselves on our fight to end HIV stigma and discrimination. So here is a nice HIV pozcard for you…

If you are curious to see some more HIV pozcards have a look here. Interested to work with us on another HIV pozcards? Get in touch!

I am looking forward to an exciting new year with lots of wishes of more positive change to our HIV community.

A positive 2024 for everyone! Peace,

Eliane

World AIDS day 2023

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Today is World AIDS Day and the theme is “Let communities Lead”.

We have been facing HIV stigma over the past 40 years. While nowadays in many parts of the world people living with HIV can live a healthy and long life as long as they access good health services. At the same time let us not ignore the fact that “STIGMA KILLS” and contines to harm more people.

In 2021 Stories of Hope started as a locally-led initiative in our fight against HIV stigma and discrimination. We now represent a global community of talented people living with HIV and, since recently, our HIV allies. On Stories of Hope they share their stories about breaking HIV stigma. Today we are very proud to introduce our fabulous Hero of Hope Luis Noguera as they share their incredible fight against HIV stigma.

Thank you Luis!

Read more about HIV Stigmafighter, the driving force behind Stories of Hope.

With us NOW!

hivstigmafighter

Hello my lovely people,

Today we are celebrating World AIDS day. Being part of the HIV community I try to contribute in as many ways as possible to fight HIV stigma and discrimination. So as HIV Stigmafighter you can see me connecting and speaking up digitally and physically, globally and locally.

This year’s theme is ‘Let Communities Lead’. As regular readers know, in previous blogs I have been pointing out how important it is to be part of thriving local communities and making sure that our achievements are shared and celebrated at the global level as well to continue inspiring eachother in our fight against HIV stigma and discrimination.

I am very proud of my close connection to the Irish HIV community. My first contribution as HIV Stigmafighter to the Irish community was last year when I was part of a photo exhibition on people living with HIV, organised by Steven Doyle, joined Robbie Lawlor’s and Lady Veda’s Pozvibe podcast, and attended the HIV Ireland conference.

Fun at the Pozvibe podcast with Robbie & Veda
Ireland here I come (Photo: Sil-Hong Won)

Today I am proudly joining the Irish community as Eric the dragking ‘a colourful black ray, stomping stigma away’ at the famous The George nightclub in Dublin! Being part of this amazing entourage already earned me the title of Irish talent.

On stage I am excited to join artist and activist Luis Noguera which is a very special moment as Luis is also our newest Hero of Hope on our Stories of Hope platform. Please read Luis’ touching story of overcoming HIV stigma and shame!

Luis Noguera (Photo: @ciarangildea)

To me these past two year of working with the Irish HIV community to fight HIV stigma in so many creative ways is a very good example of how local HIV communities should lead our global drive to fight HIV stigma. We need our partners to seriously listen to us to make sure that addressing our challenges, ideas and solutions are made core in global and local HIV action.

Peace,

Eliane

Positive power

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My lovely people,

Have you ever had a dilemma where you had to choose between what is best for you as a person or for us a HIV community? Last week I had to make such a choice. While getting ready for the 19th European AIDS Clinicians Society (EACS) between 18-21 october in Warsaw, Poland, on the 13th of October my sister died in Gihanga, Burundi.

So, I was torn between dealing with grief and organising the funeral of my sister and representing the HIV community. That was such a hard choice. Deep down, I knew my sister would have loved me to carry on doing what is my passion in life, representing and speaking out on behalf of the HIV community. So, with a broken heart I made my way to Warsaw to meet up with my dear HIV community and our partners.

I realised that we as a HIV community are able to contribute to fighting HIV stigma in so many different ways. Whenever we can we should be…

Speaking out

The 17th of October was an exciting day for me to speak out as HIV stigmafighter at the Stigma and Discrimination Forum which was organised a day before EACS. It was a great moment to point out the persisting stigma in the healthcare system. Thank you Virology Education for giving the HIV community an opportunity to speak out.

Group photo of forum participants and organisers. Photo credit: Krystian Lipiec

Debating

The next day I was a penalist in the WAVE (Women against Viruses Europe) workshop “I am every woman“ where I was representing migrant women living with HIV. I believe that powerful migrant women, open about their status, are key to briding the gaps between the healthcare system and migrant women living with HIV. How else will we improve access to PrEP? Thank you WAVE, for giving migrant women a chance to share their stories and insights.

Debating at the WAVE workshop

Sharing

On the 19th I shared my HIV jounery as a motivational speaker in the ‘community corner’ organized by European AIDS Treatment Group (EATG). I am so glad to see these dedicated spaces where the HIV community can interact with our partners. These are always the most vibrant spaces of any conference!

EACS Community Corner. Photo credit: Steven Doyle

Coaching

My week in Warsaw ended on a very high note! Together with AFEW International, Positive Women and Fundacija HelpNowHub I organised a positive lunch for Ukrainian women living with HIV in Poland. This was a great moment to work together on our dreamtrees and share and discuss our futures of living with HIV. I was truly touched by the resilience of the women I met, it was a very memorable Sunday!

You may have noticed that lately I have been priviliged to engage at different events, such as Fast-Track Cities, Virology Education’s Forum on Stigma and dicrimination and EACS 2023. I am noticing a very positive trend: More and more of our partners see the HIV community as empowered citizens in our global fight against HIV. If together we keep on making sure that our voices are being heard around issues such as PrEP diversity, fighting HIV stigma, growing up positively with HIV, we can bring real change to the lives of people living with HIV.

At EACS 2023 I was able to witness the great work the HIV community continues doing. Together with our partners, we can make the transformation of their work into our HIV community. Without the HIV community there will be no science.

Keep empowering our HIV community and be inspired by us for great positive outcomes!

Thank you sister, peace in heaven,

Eliane

A vivacious HIV community

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My lovely people, these past few days I have been very proactive and this is really boosting my confidence and energy as well.

Last weekend I was invited to give a THRIVE workshop during the 4th National HIV positive Day, an initiative by Utopia_BXL, which aims to bring together the Belgian HIV community and partners in Brussels, Belgium. This was a great opportunity to share THRIVE with the HIV community as a valuable contribution to living and ageing healthily with HIV.

The THRIVE workshop was scheduled in the afternoon after a morning mostly filled with presentations and discussion about quality of life, challenges of the migrant community in Belgium, etc. Following these, THRIVE is perfect as it is engaging and fun. In a THRIVE workshop there is no time for boring powerpoints or keynote speakers. No, THRIVE is all about being lively, excited and energetic. In other words about being vivacious!

THRIVE started by exploring the dreams and aspiration of the HIV community and our allies. This was the first time ever to use the unique dreamtrees co-designed with our thrivers. And participants were really passionate about making their own dreamtrees and eager to share their pieces of art. Aren’t they lovely?

What is so good about the dreamtree is that by sharing their future, the participants get very practical hints and tips from others on small steps they could take now. And also on how to remain patient and focused on achieving their bigger dreams.

The favourite game for many participants was our brand new addition, the Tower of Trust! They really loved the feature built into the game where you can ask questions that have been bothering them and that they would never even ask to their own family, friends, or doctor…

This was their chance to pose them by hiding them in the Tower of Trust. So, with all these questions hidden in the Tower, no one will know who posed it.

Then, when any question is drawn, we would discuss together without any judgement. Participants really loved this game because they have so much freedom to express themselves anonymously and then have lively discussions about issues that are bothering the HIV community. Many wished we would have more time to play it!

Example of a tower of trust question: “Why am I the only person in my entire family living with HIV?”

The final three steps (Spark, Grow and THRIVE) we celebrated being part of the HIV community. I ‘sparked’ the party with a poem called ‘It is my time to fight HIV stigma’. And yes, it was my debut to cite it in French! We then learned taking some baby steps towards living positively, Africa style, and finished the workshop with a positive dance, energized by some sweeping Africans songs.

What a workshop! I understood it was very much appreciated by the participants and some requested if we could do it again in future. It gave me immense joy to see that my vision to live and age healthily with HIV can be put into action by the HIV community itself.

I am so proud that THRIVE can be a part of creating a vivacious HIV community!

Peace,

Eliane

Can we be brave together?

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My lovely people, in many cities all over the world we celebrate Pride in August. Pride is an important moment for the LGBTQIA+ Community to express themselves.

Thanks to an invitation from Sensoa Belgium, I was happily part of Antwerp Pride and contribute to their campaign Is PrEP iets voor jou? (is PrEP something for you?). A key moment was the parade on the 12th of August. I found it very inspirational to join the parade and I also learned that still so many people are not aware or don’t even know about PrEP as a way to prevent someone HIV negative from getting HIV.

During Pride, Antwerp transforms into a brave space where everyone can be who they are within a respectful society. This also means having the courage to stand up and act against stigma and discrimination. Therefore, I was very proud to promote PrEP Diversity. As I pointed out, many people, especially women, with a migrant background are still overseen in stigma reduction and prevention efforts and still do not have equal access to PrEP. I am proud that I contributed to making Antwerp an even braver space by demanding PrEp diversity!

During Antwerp Pride I also celebrated many performances of local artists with so many people who truly felt safe to express themselves in this brave space. It fills me with joy to see them join Pride and be themselves because we manage to create this brave space.

Yet, let’s not forget that many cannot be who they are in their homelands. I wish a brave space would exist anywhere in the world, and not only during one week of Pride each year. A brave space should really not be an event like Christmas, where we wait the whole year to celebrate for a few days and then move on again. We should be able to express ourselves every day!

Frederick Douglass once said “If there is no struggle, there is no progress”, and we should work hard with communities, organisations and governments to promote and protect the human rights of all persons, including the LGBTQIA+ community, without stigma and discrimination.

So let us normalise brave spaces, and the easiest way is to start with yourself by creating a space in your heart to accept and respect each and everyone’s choice to be themselves every day of the year!

Can we all be Brave together?

Peace,

Eliane

THRIVE

THRIVE

hivstigmafighter

Hello my lovely people. Some of us are always counting their age, forgetting to do the things that make them happy. Remember, there is no such thing as putting your life on hold, because we are all ageing, every day!

This may sound weird, but I am always looking forward to ageing. When you cherish your dreams and love your life, ageing should not be your problem. As long as you are happy with yourself! Look at Eric the dragking, never giving a damn about age at all. Who knew I would be  the first Dragking to be open about thriving with HIV?

Work with us to THRIVE!

Of course, for many of us living with HIV, it is quite a journey to get to this comfortable place that we all need to live and age healthily. Knowing first-hand how difficult it is and how many barriers we need to break, I have always been very committed as an activist member of the HIV community to share my personal experiences to change my lifestyle to improve my health-related quality of life.

Yes, there are many discussions and workshops on this topic, but how many of us really work together with people living and ageing with HIV instead of for them? So being always full of ideas as an HIV activist and entrepreneur, you may remember that last year I gave a performance called five ways to THRIVE. Well, sending the message through a performance or workshop is not enough!

What if we ask the HIV community directly to share their dreams, what they do to regain trust, and to share their journeys towards staying healthy while ageing with HIV?

Today I would like to share with you that we have indeed started to engage the HIV community to co-design community tools to express our challenges, and share our dreams and ideas to age healthily!

I am so blessed to get a lot of support from friends in the worldwide HIV community to think along, THRIVE is very much alive!

Through THRIVE we, as creative members of the HIV community, want to keep developing useful concepts and share our experiences. But we cannot do this alone and we will need support from our HIV allies to work with us to THRIVE while ageing healthily with HIV.

So, are you curious how you can engage with us? Get in touch and let’s THRIVE together!

Peace,

Eliane