amfAR, The Foundation for AIDS Research

Breaking Her Silence: An Interview with HIV Activist Maria Mejia

NHNAMaria Mejia kept her HIV diagnosis a secret from almost everyone for nearly 20 years. Diagnosed at 18, she told family and friends she had leukemia.

Mejia, who lives in Miami, has since become a tireless advocate for people living with HIV. She is a global ambassador for The Well Project, an international nonprofit for women and girls with HIV, the founder of two international Facebook support groups, an HIV counselor, motivational speaker, and co-author of From a Warrior's Passion and Pain, a real-life account of her battle with HIV.

In observance of National Latinx AIDS Awareness Day on October 15, we spoke to the Colombia native about her 1991 HIV diagnosis, breaking her silence two decades later, and her passion for human rights and HIV education.

Can you describe the events leading up to your diagnosis?

I had enrolled in the Job Corps program in Louisville, KY, in an attempt to get my life together. I grew up in a very violent home with an abusive father. I ran away to the streets and was part of a gang. I was in foster care at one point. Job Corps tested us for everything, including HIV. I remember getting slips from the clinic asking me to come in. I ignored them. HIV never crossed my mind. When I did finally go, the doctor sat me down and blurted out, ‘You have AIDS.’ I felt numb. I saw my whole life pass in front of me, and I said to myself, ‘My life is over.’ I was given the option of AZT. I said, ‘I appreciate it but no. I want to go home to die." It was a week after my 18th birthday.

How did you cope with being diagnosed so young at a time when there was so much fear, ignorance, and stigma surrounding HIV?

My mom, who is very religious, didn’t think I was going to die. However, she didn’t want me to tell anyone. I only disclosed to sexual partners. That December, we moved back to Colombia, where there was no AZT, no support groups, and more stigma and ignorance than in the United States. I would get bits of information—Ryan White, Kim Bergalis, an occasional documentary about HIV with a tragic ending. As a young woman, I felt like I was dying. I was traumatized. I came back to the United States in 2000. I was fatigued. I had developed thrombocytopenia (low blood platelets), and my T-cell count was dangerously low. I started on medication right away.

I’m a 29-year survivor. I have PTSD, anxiety, and survivor’s guilt. But life is what you make it. I could lay down and die or I could fight. I choose to fight.

What made you eventually decide to break your silence?

In 2010, my ex-partner’s sister was dying from brain cancer. I remember sitting in hospice with her praying the rosary. I asked myself, ‘Why when a person says they have cancer they get compassion, but when you say you have HIV, you get questioned?’ I was tired of lying. This is a human condition. I wanted to show people that this can happen to anyone. So that's when I decided to use social media to reach all corners of the world. Up until then, I had done some speaking in small settings—prisons, churches, schools. I had taken an HIV education class, and the supervisor had encouraged me to become a peer educator. But I had never shared my diagnosis on a large scale.

Latinos account for about one-quarter of new HIV infections in the United States, despite making up only 18% of the population (CDC). Why are the rates so high?

The biggest thing is ignorance. Religion plays a big part too since HIV is something that is usually transmitted sexually. Sex is a taboo topic. The media are also to blame. I did an interview with Latino media one time, and they were like, ‘You contracted HIV so you must be promiscuous.’ I have been called an AIDS patient and other stigmatizing labels. When I go to schools, I still cannot say the word ‘condom.’ I have to preach abstinence. I also encounter teenagers who think HIV is no big deal. They say, ‘Oh I don’t care if I get it. I’m going to die from something.’ Then some are completely ignorant: ‘Can you contract HIV from sharing a glass?’

What needs to be done to combat the spread of HIV in the Latino community? (I acknowledge that the Latino community is vast and diverse).  

We need to humanize the condition, show our faces. The entire community, including religious leaders, also needs to get educated and know that an undetectable viral load means HIV is untransmittable. That’s one way we can stomp on stigma because people are no longer going to be afraid of those living with the virus. Hopefully, that will also empower people with HIV to disclose their status and adhere to treatment so they don’t continue transmitting the virus to others.  

You have an incredible resume—motivational speaker, HIV educator, author, blogger, social media activist, counselor. What fuels your passion for human rights and HIV education?

I don't want anyone to go through what I went through. When I was diagnosed I would have wanted someone like me to say, ‘I’m a long-term HIV survivor. As long as you do this, this, and this, you’re going to be OK.’ And that's really my mission and passion: to save lives, to prevent HIV infections, and to give hope to the hopeless. The road has not been easy. I’m a 29-year survivor. I have PTSD, anxiety, and survivor’s guilt. But life is what you make it. I could lay down and die or I could fight. I choose to fight.