The NAM Facebook page recently reached a milestone of 1000 followers and to celebrate we decided to feature one of our fans here in the NAM blog. It seemed fitting to highlight Maria T Mejia, an HIV activist and advocate who has been making the most of social media opportunities to share her story and reach out to other people living with HIV.
Maria is Colombian and lives in the United States, but the story of her experience of living with HIV is available around the world through her blogs, her Facebook and Twitter pages and her English and Spanish vlogs (video blogs) on YouTube.
For many people with HIV, choosing who, when and how to tell their friends and family about their HIV status is a big decision. What’s it like to go public online?
“I am what you call an HIV/AIDS media activist! I know many people who are in hiding all over the world and look for media and internet to get resources and information. This is very important because you do not feel isolated anymore! Not everyone is prepared to go to a support group – and some people around the world don’t even have that option.”
Disclosing online
For Maria the impetus to talk about her HIV status came after her partner’s sister died from cancer. As many other people do, she thought about how different it would be if she had a different health problem – and asked herself why she should hide her HIV status. As she said in her blog, “I am tired of feeling like I am a fugitive…in constant fear of people that I don’t want to know finding out about my status.” Maria believes that by showing her face and being open about her status, she is fighting stigma in a powerful way.
“My instinct told me: what would I have wanted 20 years ago when I found out I was HIV positive at such a young age? Information, a support system of people that had the same condition as myself or had more experience.
Something clicked and I went media crazy! I am everywhere and I chose to show my face to take stigma away!”
Disclosure on Facebook
Maria chose the user name ‘MariaHIV’ on Facebook and through it has met lots of people online – some openly HIV-positive people, some people with HIV who have only recently been diagnosed, some who have been living with HIV for many years and many others.
“I also created something that I feel is very important for all of us – we have an interactive support group on Facebook that has people constantly posting about everything at all times of the day or night.
The English-speaking one is: ‘International place for people with HIV/AIDS, and the people who love us’ and the Spanish-speaking one is: ‘Grupo internacional para personas con Vih/Sida, y las personas affectadas’.”
Maria describes the experience of being openly positive online as rewarding, giving her the opportunity to meet people from all over the world, but it isn’t always plain sailing. As well as attracting other positive people and supportive friends, just adding the letters ‘HIV’ also attracts people with agendas of their own – and, as Maria describes in her blog, being openly positive has made some of her Facebook friends uncomfortable, fearing that their status will be questioned by being friends with her.
Although being open about her status is a great way of challenging people’s perceptions of HIV and fighting stigma, it’s not for everyone. Maria’s careful to remind her readers and viewers that not everyone has to be an activist.
A message from Maria
We asked Maria if she had a message for our readers:
“Remember: we are not delinquents! We should never feel shame! We just have a condition and I will do what is in my power to take stigma away…by education and showing my face and telling my story!
For those that are not infected: please love yourself, protect yourself, and test yourself! Respect the virus! As I always say: it is not a death sentence anymore, but it is a life sentence – it’s not as simple as taking a pill and you will be fine.
And for those newly diagnosed: look at me and others in the fight as your example – you can live meaningful productive lives! Just be proactive with your illness, use media to investigate! Share with others! Research everything you put in your body! And have a very good relationship with your doctor.
Thank you very much for having me. Love and Light.”
For more information
We’re delighted we’ve reached 1000 followers on Facebook – and we’re always happy to connect with more people there! You can find our page at www.facebook.com/pages/NAM-the-HIVAIDS-information-charity/99971718192
You can read Maria’s blogposts at A Girl Like Me and on the US website thebody.com – and you can connect with her on Facebook and YouTube.
If you’re thinking about who to tell about your HIV status, you might find some of our resources helpful. Visit the topics page, Telling people you have HIV, for related resources and news.