Facing HIV: Empowering others through education and advocacy

June 29, 2011
By: Lisa Laing/TRT Special
Maria Mejia is 37 years old, was born in Colombia and has lived in Miami, Florida her entire life. She discovered she was HIV positive when she was with the Job Corps Program where they tested individuals for the virus. She was infected with it around the age 16 from her first boyfriend who at the time, unknowingly to her, was and I.V. drug user and also a gang member.  She had a wonderful mother growing up, but at the age of 3 was sexually molested by an uncle and having to deal with a mentally abusive father she ran away from home at the age of 13, which is when she met the boyfriend who would ultimately change her life forever.

What is your relationship like with your family?
My relationship with my family is awesome! My mother has been my rock from the beginning but there are some people in my family in Colombia where I am from that think I have another illness; they are very ignorant to the subject.

Does your family know and if so how did they react when you first told them?
My mother was the first one I told back in 1991, back then, there was even more stigma, she accepted me and by tried to protect me from being hurt. She told me this is something we will keep to ourselves; we will say you have another illness. After the years passed, I started feeling out some of my family member and disclosed to a few, they reacted really well because I was a trained HIV educator and I made sure I educated them long before I disclosed it to them.

Today people see HIV/AIDS as a chronic disease because of the medications that are available, but I think that undermines the disease itself. What can you tell our readers about the HIV/AIDS virus so that they truly understand the effects it can have on the body?
This is exactly what I was talking about-people are minimizing it because they see us looking good on the outside. People don’t see the side effects of the medications, which is sometimes more horrible than the disease itself, like body changes. Some people lose fat and gain it in other places, their bodies can become disfigured, it’s very sad. Or, they lose fat in their faces, it’s called a lipodistrophy or lipoathropy-most get neuropathy. It is horrible, its nerve damage, and you are in constant pain 24/7 in your feet and legs and hands, like stabbing needles and numbness. It is so bad they prescribe you morphine and heavy duty narcotics which can lead to even more problems like addictions, gastritis, diabetes, aging quicker, renal problems … The list goes on and on. I will continue to say this and please listen, “HIV/AIDS IS NOT A DEATH SENTENCE, BUT IT IS A LIFE SENTENCE, you get no breaks and you will most likely take very toxic medication until you die.”

What do you think the government can do or should be doing to help in the fight against HIV/AIDS?
I think it is very sad but this disease is being minimized. I believe they should fund for more education, this is the key for everything, to prevent new infections and also for those already living with HIV/AIDS to help take away the stigma, which is something we have to face every day living with the virus. Also, there needs to be more research to find a cure, more into research for a cure.

I am thankful for the medications out there but sometimes the side effects of the medications are stronger than the illness itself. Another thing that has me worried is how young people and adults minimize this illness. People seem to think if you get infected you take a pill and you are fine, this is incorrect and as i always say this is not a death sentence anymore, but it is a life sentence.

What can we teach young people who are becoming sexually active about HIV/AIDS?
That it is not a gay disease or a disease for prostitutes or IV drug users only, that anyone can get it. I got infected, I believe when I was 16 years old and this is no joke, it’s a hard illness to deal with and if you have unprotected sex only once, that is all it takes. I want them to protect themselves and not go through what I have been through. If they can’t practice abstinence then you must use a condom. Just because you look good on the outside that does not mean you can’t have HIV/AIDS. I want them to look at me when they think about having unprotected sex, ANYONE COULD HAVE IT!

Why did you decide to openly share this with the world?
I’m trying to remove the stigma attached to HIV / AIDS. I’m trying to remove the shame that people have connected with the disease. I’m trying to save lives. We are not criminals. Many people have no compassion and can judge others very cruelly.

When did you find out you were HIV Positive?
I found out when I was 18 years old, but I think I got infected at 16. I was in a program called Job Corps, which evaluated all who were there. I underwent HIV testing with no major concerns, because at that time people thought that AIDS was a homosexual disease.

How did you contract the disease?
I think I contracted it from my first boyfriend. We were very young, but a few years later I learned that he used intravenous drugs and he was a gang member.

What kinds of myths were prevalent at the time?
One of the prevalent myths was that HIV was a death sentence and you were going to die within months. Another myth was that only prostitutes, homosexuals and drug addicts contracted the virus, or you could get it from a mosquito, or drinking from the same cup as someone who was infected. It was a time full of follies and perpetuating misinformation and stigma. People thought heterosexuals were “clean and free” of the disease and if you had heterosexual sex you were fine, but that was not the truth. I was only a teenager. I was 16 years old.

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Maria continued

What was your initial reaction to the diagnosis?
Back then it was a death sentence. I was alone, away from my family. My first reaction was shock, because the doctor who gave me the diagnosis did not prepare me. When I saw his eyes, originally I thought he would say I had lung cancer or something similar, but he told me in a direct way that I had AIDS, it was really shocking. At that time I wanted to die.

When did you decide to fight this disease say, “No, I’m not going to die?”
At first, I refused to diagnosis and would not go to doctors to remind me I was HIV Positive, which happens sometimes after a diagnosis. Later, I decided to take control of the situation. I went to a doctor who recommended some strong medication even though it could damage my internal organs.

What did you do then?
I wanted to live longer and did not want to die of something else, such as renal failure that was common at that time because of drugs. It was then I realized that I could not sit and wait for death, and had to do something. I took control of my life and started living a healthy lifestyle.

Did you talk to someone about your diagnosis?
At first, only with my mother and my brother, then shared my secret with some friends, but unfortunately, one of them said “Oh, I cannot believe you just let me take your beer.” It was very shocking.

Have changes occurred in your life since you knew you were HIV positive?
It’s been a long process. I have had offers to model and announce HIV drugs. At first I did not want any of that embarrassment, but slowly revealed my condition to small support groups and volunteered to work with them. Two important things have happened. First, being tired of hiding like a criminal; second, my partner’s sister died of brain cancer two months ago and that was when I said “Why can people say I have this horrible disease and I cannot say I have HIV? I am not a criminal.”

Are you receiving any treatment?
Well, the first 10 years I was taking natural medicine; my mother has a health food store. Currently, I take antiretroviral, Coenzyme Q10 (400 Mg.)- it’s natural supplement and that helps with the toxicity of the medicines Mitochondria destroyed- Vitamins C, B12 and healthy eating.

What activities do you do?
Thebody.com and write articles for the Well Project, A Girl Like Me. I also speak at conferences. I volunteer at Jackson Memorial Hospital at the University of Miami as a Peer Educator. Through my Facebook page and email I have for the body.com I give advice to those newly diagnosed or those who have a long history with the virus and those who are suicidal.

Among other activities, I give talks in Miami Dade County Public Schools. I’ve been active in this fight and soon I will join Positive Connections to lecture and I will be part of the plan committee.

What would your final message be for people?
If you have unprotected sex, it only takes one time to get HIV/AIDS. It can happen to anyone, from the youngest to the oldest. We are strong people and survivors; please do not minimize the disease. Get tested, it is better to know than not know so lives can be saved. “Having HIV / AIDS is not a death penalty, but it is a life sentence.”

For more information about the impact of HIV or to learn more about Maria, please visit http://www.thebody.com/content/art60152.html, http://girllikeme.org/2011/06/13/discrimination-and-stigma-these-are-the-stories/, http://www.vihvir.com.ar/tiempo-de-contar-mi-historia and http://issuu.com/recorriendoamericanews/docs/recorriendo29/17

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