Stigma at times of COVID-19

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!

Peace, Eliane

HIV medication exchange

I would like to share an article (in Dutch) published on 9 Jaunary in the magazine Hello Gorgeous. It is about a topic that I am really passionate about: Ensuring that unused HIV medication, still in its original packaging and meant to be destroyed here in the Netherlands, reaches people with HIV in places where there is still no access to life-saving medication. In the text below you will find the translated text in English:

Ready to be sent to people without HIV medication in Romania

Hello Gorgeous: “How did you get this idea to collect HIV medication for Romania?” Eliane: “Last year I met a Romanian woman during a meeting of the European AIDS Treatment Group in Brussels. She was looking for people who wanted to donate their HIV medication to pregnant women with HIV. We became friends on Facebook and kept in touch. When she told me that these women are regularly without HIV medication, I was heart-broken. Without HIV medication they risk their children being born with HIV. I don’t understand this is still possible in Europe. “

Hello Gorgeous: “What are you doing to tackle this?” Eliane: “I am continuously asking people in my network, via messages and emails, if they have any medication left. Often, this happens when people switch medication, then they are left with unused medication. I collect this, compare it with a list I get from my contact in Romania, and then I send the required medication to Romania. It hurts me, to see we are so committed to climate action, for example by recycling, but that we are still throwing away perfect medication which can save lives elsewhere. This only happens because our rules are such that medication prescribed for one person cannot be transferred to someone else.”

Hello Gorgeous: “Have you also approached pharmacies to help you?”. Eliane: “Certainly, I talked to a number of pharmacists here in Amersfoort. They told me that they used to collect medication in the past but that this ended when health authorities required them to stop this. I always tell them to give it to me secretly. It is so difficult to accept that unused medication is destroyed while we can find a purpose for it. Meanwhile, we still worry about someone dying every 40 seconds of the effects of AIDS due to a lack of access to medication.”

Hello Gorgeous: “What can people do if they want to send you their unused HIV medication?” Eliane: “If people switch their HIV medication and still have unused supplies at home, they can contact me. Send me a message via hivstigmafighter@gmail.com and you will hear from me.”

This message gives me courage to continue HIV medication exchange

Hello Gorgeous, thank you so much for publishing this article. Already I have been approached by people, asking me how to send their left-over medication to me. Many people living with HIV in Romania will forever be grateful to you.

I really hope to expand this project in 2020, so more people with HIV in Romania or elsewhere in this world can continue using life-saving HIV medication even.

Peace, Eliane

Be my messenger

Dear Santa,

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.

Peace,

Eliane.

De volgende generatie

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.

20180909_1517181291279715.jpg
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