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.
My dear lovely people living with HIV, I am not sure if we all know what U=U means. If not, I am always glad to explain it once again as it is really important to know U=U and how it can help to break the HIV stigma.
If you have an undetectable viral load, it means that you cannot transmit HIV sexually. I believe this information should be known widely as I have come to realize that there are still people out there that lack this information. So, to highlight the impact of U=U I will share two stories of young couples where U=U saved their relationship.
My first story happened in October last year, when I got in touch with a HIV+ American woman with undetectable viral load who follows my HIV stigmafighter facebook page. She fell in love with an African migrant from Senegal and I just finished to share a post about the U=U campaign in French. Immediately she contacted me via messenger and asked me if I could talk to her boyfriend about U=U.
I explained U=U to him through this picture in French. He told me that they already had intercourse and that some time after that she told him about her HIV status. At the time he panicked, thinking it would be the end of the world, especially since he recently was tested HIV negative before donating blood. I was quick to comfort him and inform that she could not pass it on to him because she is Undetectable. I recommended him to go back for another test to discover the truth.
A few days later he got in touch with me again and he was very happy and thanked me for guiding him in the whole process. He send me a small message saying “Hello Madam , I want to thank you for your help. I did HIV test and I am negative. I believe now in U=U”. He confirmed that he will keep on loving her and is planning to start a family with her. I now heard from them and learned that soon they are going to get married! What a happy ending!
My second story is about a young African migrant woman living in the Netherlands. I used to be her HIV peer counsellor and during one of our sessions she explained her worries about having children. She was madly in love but she did not want to disclose her status. First of all, I checked if she already knew something about U=U and she told me that she heard about it but did not understand it since she always communicated with health professionals through an interpreter who does not have knowledge on HIV terminologies. So, I explained clearly to her in French what U=U means since this is her preferred language to communicate. I told her that if she really wants to have a baby with her boyfriend, she will have to tell him to make him understand what it means to be undetectable.
I also stressed to her to use the fact of being undetectable for her own benefit, and that she should ask him to find out about his status as well before sexual intercourse. The reason for this is because if it then so happens that he is HIV+, they will not later on argue about his status. Being open about status and being undetectable will really help him understand that there will not be any danger for him.
After our chat, she went home convinced to be open about it. On the same evening when he approached her romantically she decided to tell him. He accepted her advice and they went to see a doctor together where he also learned more about how he can support her. He also got in touch with me to hear more about my and other experiences, which made him really excited to start a family with his girlfriend. Two months later she became pregnant and now they have a son that was born HIV negative.
Long live U=U, it saves relationship and helps to break the stigma!
Last Saturday 5 December I organised the “Stop HIV stigma Show” in my hometown, Gihanga, Burundi. I believe that by organising these type of events that one day my dream will come true: To defeat HIV stigma in our community! Here you find an impression of this beautiful day.
Pictures of this day are made courtesy of Ingabire Media and Chouman. Enjoy! Peace, Eliane
There was a lot of entertainment as well. Multi-talent Bryere in a traditional outfit playing the igondera, gifted Devie with a beautiful HIV stigmafighter button, the brilliant girls of Amazing Team, a group of awesome visuallly impaired singers from Lycee Kanura Band, a young performer from Fit Fashion Fire Team, and our two enthousiastic MCs Emi-Bravo and Chadou:
Then there was lots of important speakers during the event. The co-organiser Irene Kundubumwe, the representative of the network for people living with HIV in Bubanza Province Madame Kanyana Daphrose, national association of young people living with HIV Nshimirimana Salvator and Chantal Mbonankira
And to finish this beautiful photo impression, here you see my Batwa friends posing in front of the banner for the show. These were my real guests of honour and had a well deserved frontrow seat during this amazing day in Gihanga. Mwarakoze!
It is 1 December, WORLD AIDS DAY, and this year’s theme is “Global solidarity, resilient services”.
The world has known a rough year because of covid-19. And this has sometimes made us forget about the fight to end HIV and AIDS by 2030. I would like to take this moment to bring our fight back to the communities that need access to health services most, for example our Batwa, indigenous people in Burundi.
I cherish these moments of HIV education, using music and dance to connect and make important messages very easy to remember.
Let’s reach out to vulnerable populations and assist them to access HIV services when needed, and get back on track to end AIDS by 2030.
This week I ‘hacked’ the #hiv2020online instagram account for 24 hours. I decided to share my 18 years journey of living with HIV in 18 posts on their storyline. Here you see 2 of them and soon you will see more.
Using the power of Instagram, I shared 18 pictures of moments that meant a lot to me. Pictures are very powerful: They keep our memories intact, they are reminders of what happened, and they can trigger emotions. But most importantly they tell me why I must keep fighting HIV stigma.
So telling my 18 years HIV journey via Instagram storyline was a challenge as I relived sadness, but also joy and empowerment in my fight against HIV Stigma.
Now that I have 18 defining pictures of my life with HIV so far, I see more clearly that my efforts have not been in vain! I rediscovered my Joy and my Talents in life, and my dream for my next 18 years with HIV is to realise a World free from HIV stigma and AIDS deaths -related. It is possible!
My life has been quite a roller-coaster the past weeks, so in this blog I would like to express myself and share what I have learned.
The problem started 5 years ago when I developed pain in my chest and I was given anti blood clotting medication by my GP. Then, the cardiologist told me to stop it because, according to her, my heart was healthy and it was because of the stress of losing my brother. I stopped and a week later on my way to London for holidays I got a heart attack at Antwerp station on 3 August 2015. In the Hospital in Antwerp they did a lot exams and told me it was caused by a blood clot. So they put me back on medication and the pain in my chest was gone. I lived without fear of having a heart attack.
Last year during the summer of 2019 I started having heavy menstruation and it went on for 3 weeks non-stop. I even collapsed during a flight back from holidays and ended up at the emergency room at Schiphol. A place where by the way I was mistreated by the medical staff the moment I told them my HIV status. They accused me of putting in danger other people’s life in the plane because of my bleeding and I was supposed to stay away from travel until it was over.
But the bleeding simply did not stop, so I went to my own hospital where I was told I had a fibroid in my uterus. Keeping me on the same medication I continued bleeding heavily every month. But at some stage I lacked so much blood that I ended up in hospital for a blood transfusion at the beginning of 2020. Still, no changes to my medication.
Then, in March this year I visited my cardiologist and he told me that I didn’t need to visit anymore for regular check-ups, only to see the GP four times a year to check my blood pressure. He sent a letter to my GP with an updated medication list, including the anti blood clotting medication. By then I already told my gynaecologist my family history of my two sisters who had the same problem. She told me that if the bleeding did not stop, that my last option, after trying a new anti-conception called mirena, they would consider removing my uterus. My heavy bleeding never stopped since it started so it became a chronic problem to me. And so I survived through most of the summer.
Three weeks ago is where the communication problem seriously started. As the bleeding continued, I was now anxious to hear the gynaecologist’s plan to solve my bleeding problem. Knowing what she told me before about removing my uterus, I was in shock when she said ”Madam, there is no need to remove your uterus now that Mirena does not work with you, and you can stop the anti blood clotting medication. After that we will see how things will be going without those two“.
I was in shock to hear I had to stop my anti blood clotting medication. I immediately recalled what happened 5 years ago. So I asked why should I stop it and she said that she had a discussion with the cardiologist and they concluded that I never really needed it. To me it was so tough to hear from the gynaecologist to tell me to stop medication that I have taken for so long. To me, this seemed just for the purpose of solving my bleeding without really considering my complicated story of heart failure and family history.
And since she informed me at the end of a Friday afternoon there was nothing I could do anymore but to stop the medication at that moment. So you can imagine how scary this idea was for the whole weekend. Meanwhile my pain was killing me and I could not wait to call my GP on the next Monday. And here came another surprise… My GP was not informed by the hospital for me to stop the anti blood clotting medication, she did not receive any update from the cardiologist or gynaecologist at all. So there was no way for her to tell if it was good or not and she advised me to call the cardiologist for him to explain.
So now I tried to reach the hospital to speak to my cardiologist. They said this was not possible as he was on a holiday, so they gave me an appointment for a telephone consultation for 2 weeks later. Can you imagine? Me having urgent questions about why my heart medication was stopped and having to wait for so long? I was angry, felt stressful and had panic attacks in the night. My pain was unbearable. So desperately I approached my pharmacist and she called the hospital to find out how long I would stop. The answer she got was the same, “Stop it, she never needed it”. To me I could not understand why the cardiologist never told me himself in march this year when I visited him, and suddenly my gynaecologist is taking charge of these two diseases?
So, the last 3 weeks I have been calling medical professionals every single day; Two specialists, my GP, and my pharmacist. So often I could not reach them and they would promise to call me back. I was always holding my phone in my hands as I feared missing a call. And so often they didn’t call back at all on the date agreed. Every day I have been crying, scared in the night, and I don’t trust myself anymore when it comes to living my life…
So, where do I stand right now? By now I learned from the cardiologist that the gynaecologist urged him to stop my medication, but that he would have preferred me to stay on the medication to reduce the risk of a heart attack if there were no problems with my bleeding. Meanwhile, the gynaecologist still does not have an alternative, and told me that I have to make a very strong case (myself!) for her to take out my uterus. So I still don’t know what is going to happen.
Dear specialists, I know that each of you is doing a good job for the benefit of your patients. But I would like to ask you to communicate better between yourselves and do so on time. And please keep my GP informed at all times! More importantly, you are dealing with a human being, so make sure you explain very clearly what is going on. And please listen to the concerns of a patient without ignoring his or her family history. The pain I went (and still am going) through I do not wish to any other patient.
Together we are strong! Work together for the sake of a patient with multiple diseases.
Yesterday the online HIV 2020 conference officially started. The past few weeks I have been working really hard with a dedicated group of people on my art performance which went live online today. As you know, I was invited to show this in Mexico, but as it was not possible to travel there, yet my art project was selected for an online exhibition instead.
I am so proud of the 7 minutes film called “A HIV Journey – A Story of Hope“. In this film you will see me perform my beautiful poem “It’s my time to fight stigma”. I hope you will enjoy it!
Before we even heard of COVID-19, people living with HIV or AIDS were already facing stigma and discrimination as I experienced and shared with you regularly with healthcare providers throughout the years. Many more people started facing stigma when COVID-19 came along in many ways, and this made things for people living with HIV or AIDS even worse.
I would like to share my experience during this period and how I overcame the stigma and help the healthcare provider to open up her eyes and take into account what her actions can mean for others. In January I needed to do a CT scan and they happened to find a something on one of my lungs. For my entire life I never had to see a pulmonologist (lung doctor) before, so on 12 February I met one for the first time.
I was nervous and curious the same time. I am used to visit hospitals for many checks up and doctors always welcomed me through a hand shake. It was at a time when in the Netherlands there were no rules yet on how to behave in these different times. So we all still went about our business as usual and every doctor I met was still shaking hands. So I had quite a big expectation of warm greetings from this doctor since it was our first meeting.
When I gave my hand, she rejected me by saying “Oh no no, I don’t shake your hands, there are many viruses around. I don’t dare to be infected!“ I immediately felt confused and started thinking and asking myself what she meant by many viruses? I don’t have Corona, I don’t have flu, the only virus I have is my HIV. Since she read my medical file she knew what kind of virus I have. So this made me start doubting her words. Why would she talk to me as if I am very dangerous to her? Did she mean that my virus would jump to her by shaking hands? I really needed to find the reason behind her behaviour.
A week later some hospitals started introducing information on not shaking hands. But there was still not yet a strong medical protocol in place. So I went back to see my HIV Doctor, and this was also a new person as my previous doctor had left recently. So on 28 February I met her for the first time, and I was not expecting to shake hands. But, when she introduced herself, she said “Hello, I am not suppose to shake hands but since this is our first meeting I make an exception and I feel comfortable about it”. This is when I explained my experience with the lung doctor and how hurt I felt. So, she advised me to better talk to her again.
Afterwards, this whole episode with the lung doctor kept on playing in my mind; how she did not show empathy during our conversation, and how she also failed to really answer any questions on the diagnosis. I went completely crazy, and I decide to see my GP first to explain the results of the scan better to me. My GP explained very clearly and then I shared with her how I felt about the lung doctor, and she also advised me to go back and talk.
I waited until May, and I finally got an appointment this week. I was very calm, and not angry but curious. I told her that the main reason I came back was to talk to her how I felt last time we met. I asked her what she meant by saying “Many viruses”. I explained that by the time we met I did have only one virus, HIV. That sometimes I get discriminated in hospital because of that. She was completely in shock and said “I am sorry I meant to say flu, corona virus, not HIV”. then I said “Well, you should have been specific, because telling somebody with the HIV virus that you don’t shake hands because of many viruses, from experience I immediately understood that you meant HIV virus since I did not have corona, or flu”. She said 5 times sorry, “I am sorry I was not aware that people can get it wrong when I say virus. But you are right, I should have said flu or corona”.
I explained that we often face stigma as some people still believe they can get HIV virus by shaking hands, that what she said really bothered me. But that I did not want to accept this, and I needed to find out what she meant. She thanked me and said “You are a strong woman to come back and talk about this with me, you taught me a lot and I am going to use it with the next patients”. I told her that I did not do it for myself, I want to prevent this from happening to other patients like me. Not everyone will dare to challenge a doctor on this, especially my Africans migrants. And they will go home and feel bad, confused and get depressed by this. But I choose to clear my path before I move on. I need us to be clear and make sure we understand each other.
An important lesson learnt for her is that language matters. I am sure next time she will take into account which words to use when communicating with patients like me so then they don’t feel offended!
Dear HIV Vereniging, Today you exists 30 years. I have had the pleasure to work with you on many projects and campaigns over the past years. I hope that during the years to come we will be able to keep on fighting HIV Stigma together.