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.
I wanted to ask you a favour for this Christmas season. As a woman living with HIV for 17 years I am grateful to live. I look at the future positively. Only sometimes I fall back when I experience stigma with health care providers or when I hear that in some places pregnant women have no access to HIV medication for themselves and their yet to be born children.
It hurts to hear that in so many places there are still pregnant women who do not have access to life saving medication. We should no longer have children born with HIV. So last week when I organized a Meet & Greet at the pink statue of the Crying Woman here in Amersfoort, my purpose was to get an impression how people were touched by the message behind the statue and to hear their thoughts on issues such as access to medication for all, especially pregnant women.
The understanding of the people I met and their support for the issues I raised, especially fighting for universal HIV medication access for pregnant women, was overwhelming. So I asked people to help spread my messages. Some even wrote and shared their own messages:
I am very grateful for the support I received that day. It shows that people finally understand how hard it is to live without having access to medication and fear that your baby risks to be born with a preventable condition.
The Meet & Greet gave me a lot of courage to keep fighting in 2020. Dear Santa, when you give presents tonight, I want to ask you to include these messages to everyone .I know you can reach so many people in one night, including the decision-makers. Let’s see the positive change in 2020.
I wish everyone a merry Christmas and am positively looking forward to 2020.