A bouquet of problems

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where people living with HIV are injustly criminalised, and in 50 countries we can be prosecuted because they have outdated laws related to sexual, but also on spitting, biting and even breastfeeding.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 

Healthy New Me

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

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.