23.5.2022

“HIV is only one detail about me, only one thing among so many others!”

Red ribbon and text that says "I´m here to tell my story. And I will tell it to everyone I ca.n."

“Hi, my name is Maya, I’m 41, I have a life that I enjoy and good friends that I love. I workout but I have to push myself hard to keep on doing it. I’m a home buddy, I read a lot and play videogame. I love the animals but I’m especially crazy for cats and cows. I love coffee, coke zero, salted caramel cheesecake, red velvet cake, cold smoked salmon and pretty much every cheese in the world. I love warm sunny days, noisy rainy storms, the forests, and the sea. I love how free I allow myself to be. I’m compassionate, outgoing, friendly, loyal, and I have HIV.”

When I have to give a bit more detailed introduction about myself, this is how I’ve been doing. HIV is only one detail about me, only one thing among so many others, that compile my being and the way I live my life.

I was diagnosed with AIDS

It was in the cold winter of 2020 when I first heard I was HIV positive. It wasn’t only that, when I was diagnosed I was on the late stages of AIDS. I had several opportunistic infections going on in my body, a PCP pneumonia, cytomegalovirus in my eyes and spine, herpes, skin rashes, my hair bulbs had died, and it was getting hard to speak and to move. I couldn’t eat and I felt numb.

It was surely the scariest thing I had ever heard about myself, naturally I was extremely shocked. I was put in the hospital, at the Infectious Diseases ward, and started treatment immediately. My first days in the hospital involved 2 to 3 blood tests a day, several image check-ups, talks, several pills, and an oxygen cannula to help me breathe. I had a whole process to get myself to swallow food, I knew that eating was fundamental to strengthen my body, so I forced myself to eat, and I did that with attention and dedication eating everything of every single meal.

State of gratitude

My doctors and all the nurses provided me with the most caring, attentive, and loving health care. They treated me so well I remember feeling amazed all the time. That is something I will never forget. They explained to me that my condition was extremely serious, and that if I hadn’t been taken to the emergency on that day, I would probably not survive the next week.

That was the perspective that changed everything. From the state of shock, I immediately jumped to the state of gratitude. I was grateful to God for giving me the chance to continue living my life, the life I had always cherished and loved so much, enjoyed and was blissful about.

I was grateful to the Doctors and nurses for such an outstanding care, not only regarding the medication but mostly for the eye contact, for holding my hand when they were talking to me, for checking up on me every 30 minutes, for showing that I was important.

By the second week in the hospital I was already feeling a lot better. The antiretrovirals are tremendously effective, they massively shattered the virus in my blood and put my viral load lower in a flash. I was being treated for all the other health problems simultaneously, I was beautifully recovering. The Doctors and nurses were clearly happy about the way my body responded to the medication and that also made me very satisfied.

After a few weeks I returned home and continued taking all the medication and following every recommendation they gave me at the hospital, and after almost one year my treatment came down to ONE PILL A DAY, which I take religiously every single day, and will continue for the rest of my life (or at least until a cure is released).

Now, after 2 years and 2 months of my diagnosis, I can tell I went through several phases, of course it is never easy to come to terms with a life sentence like this one. I knew since day one, it wasn’t a death sentence, but having a chronic disease requires changes in life. One thing about me is that I easily adapt to new things. Since I was very little, I’ve taken the adversities in life as possibilities to grow and have always kept a buoyant way of being.

The decision to disclose my HIV status

Thinking about my new life as a person living with HIV became a constant thing. I contemplated every aspect of it, every factor, every element. But I was relentlessly feeling that having to conceal my condition was not doing me any good, it was making me feel as if I had to be ashamed of it. And I am not!!!

I don’t have to be ashamed!

So I decided to disclose my status to the world.

Making this decision was like blowing the fog away, like lifting the world off my shoulders. I want to talk about it all.

I want to tell everybody that HIV is not what it was 20 years ago. I want to use my experience to help other people, in any way I can. I want to urge people to get tested, to know their status, so they don’t run the risk of being as sick as I was with AIDS. I want to show everyone that having HIV doesn’t stop, doesn’t define, doesn’t limit anybody. I want everyone to understand that a person with HIV and in regular treatment gets to be UNTRANSMITTABLE, by not having enough amount of virus to infect another person. I want everyone to realise that things changed, science evolved, I want them to see that HIV is not deadly, that is not a dirty disease. HIV can happen to anyone.

I decided to take part in the fight. I know it won’t always be easy. I know there is a lot to be done. There is so little education and so much misinformation out there that raising awareness is paramount. I believe that we must spread as much information as we can, from different perspectives, to simplify and normalize talking about HIV. I believe that we can stop HIV stigma by being intentional and thoughtful when referring to it. I’m here to tell my story.

And I will tell it to everyone I can.

Maya Viecili
Health Buddy 2022
Follow me on Instagram @positivetalkwithmaya