HIV-positive since childhood: Sophie-Elena’s extraordinary journey

Hello Sophie-Elena, thank you for agreeing to share your story with Carenity.

To begin with, could you introduce yourself?

Hello, my name is Sophie-Elena. I'm a 36-year-old stay-at-home mom, and I’m here to share my experience living with HIV.

Outside of that, I’m a huge fan of music and fantasy books.

Photo courtesy of Sophie-Elena

Could you tell us a little about your childhood and the environment you grew up in?

I was born in Romania in 1989 and abandoned at birth. I spent my first ten months lying in a small rusted crib, where I spent my days. Then I was adopted by a Swiss family. They brought me to Switzerland, and that was the beginning of a happy childhood, surrounded and loved.

Later on, a significant hearing impairment was discovered, which affected how I interacted with others as a child, even with hearing aids. But overall, I was able to grow up feeling safe and cared for, despite everything I was going through.

When did you learn you were living with HIV, and how did it affect daily life?

I had hepatitis B transmitted in the womb and needed hospital treatment. At the time, Romania was under Ceaușescu’s dictatorship and the country lacked everything, especially medical supplies. That’s how I contracted HIV, through a procedure done with an infected needle.

My parents suspected something (my mom is a nurse). They brought sterile equipment when they visited me in the hospital and took a blood sample. After the lab results came back, they knew. It didn’t change anything for them, they wanted to give me a dignified end of life, knowing there was no treatment back then.

They never hid the diagnosis from me. I always knew I had the “little virus,” as they gently called it. For the first seven years of my life, it stayed quiet. My doctor put me on daily antibiotics to prevent opportunistic infections and monthly injections of white blood cells to protect my immune system. Other than that, I had a normal childhood.

But at seven, things changed. I developed serious opportunistic infections: shingles on my scalp, combined with herpes in my throat and mouth. My viral load was extremely high, and my CD4 count (the immune defences) was only 50 per ml of blood. A healthy person has between 1000 and 1500. I almost died. Thankfully, antiretroviral medications arrived in 1996.

What do you remember about your early experiences with treatment?

My first treatment was a syrup called Norvir. It tasted absolutely awful, really disgusting. But it saved my life. I had to take it every day.

Then more treatments were added, and it became a whole routine: some needed refrigeration, some had to be taken on an empty stomach. That meant no snacks with friends, no birthday cake. I had to keep my stomach empty as much as possible between meals.

I ate very little, I was extremely underweight, and I vomited a lot. During that period, I really couldn’t tolerate the treatments.

How did your health evolve during childhood and your early school years?

As I mentioned, I had episodes of opportunistic infections. I would miss school for a month at a time. It was very hard on the whole family.

School was complicated too. I was often absent, but I couldn’t tell classmates the real reason. My parents had forbidden me to mention HIV outside our home. Keeping that secret was hard, but it was necessary to avoid bullying and stigma.

Even within my family, I had an aunt who wouldn’t let me touch her baby daughter. So, at school… I can’t even imagine the consequences. HIV/AIDS terrified society at that time.

How did you cope with the visible side effects of treatment?

In my teenage years, I developed lipodystrophy and lipoatrophy, which are scary words that mean my body stored fat only in certain places. Everything gathered in my stomach and chest, while the rest of my body was extremely thin. I looked very emaciated.

People stared. Some assumed I was using drugs.

Shopping for clothes or underwear became difficult, I had to go to specialized stores. My back hurt constantly. People either mocked me or looked at me like a freak. It was awful.

Was there a time when you wanted to stop or change your treatment?

Yes. As a teenager, because of the visible side effects, I decided to stop taking my medication. I hid the pills in a little plastic bag tucked inside my socks. I didn’t tell my parents, of course. I took my treatment one day and skipped it the next.

Blood tests eventually showed I wasn’t being consistent. Many doctors tried to help, but nothing worked until I was 20.

Then I met a doctor who said to me:

“HIV is a serial killer that will hunt you down and kill you. You must take your treatment, otherwise you will die. You’re going to go to the pharmacy every day and take your pills in front of a pharmacist, who will record it.”

What finally changed your relationship with your health in adulthood?

It was a harsh experience but ultimately life-saving. I slowly reclaimed ownership of my treatment and, over the years, understood that the enemy is the virus, not the medication.

A study in 2008 showed that someone living with HIV with an undetectable viral load does not transmit the virus. It didn’t sink in right away, but my doctor later said:

“If you stay undetectable for six months, you’ll be eligible for breast-reduction surgery because your body will tolerate it.”

That surgery felt like a rebirth after so many years of suffering from a disproportionate chest.

How has your medical journey affected your romantic and personal relationships?

Relationships were sometimes complicated, being HIV-positive can scare people.

But in 2013, I met an extraordinary man. We’re still together.

And in 2018, I gave birth to a perfectly healthy baby boy.

Could you tell us about your experience with motherhood and what it meant to you?

After a traumatic birth, I was finally able to go home with my son and my partner. It was the beginning of a new life as a family of three, a life where the virus had no place.

Of course, I still take my medication every day, and I’ve had an undetectable viral load since 2013. Day-to-day, the virus no longer affects me.

My son knows about it. He knows how HIV is transmitted. He knows I take medication, and why. He supports me, just like my partner, in everything I do around HIV.

What motivated you to share your story and raise awareness?

I’ve become a spokesperson for HIV and for my lived experience. I also raise awareness among healthcare workers about best practices and give talks regularly.

It’s important to talk about HIV in a positive, accurate way and to change how people perceive this virus.

A final word?

Thank you for giving me the space to share my story.

I want to end with something essential: Undetectable = Untransmittable. U = U is something everyone should know and remember.

And please: get tested every three months. Knowing your status is key to stopping the spread of HIV.

A big thanks to Sophie-Elena for trusting us with her story.

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Take care!