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Stigma Within Our Own HIV Community

April 6, 2011

This article was cross-posted from "A Girl Like Me," a program of The Well Project.

Once again my blog will be about something that happened in my Facebook. I have the name there "MariaHIV." I created that name not because I am HIV positive, but because I wanted to attract people to it. So, by now I have met wonderful people from every continent! Awesome advocates, activists, people who are recently diagnosed and long term survivors like myself, and everything in the middle -- many people who are suicidal and feel like their life is over, some very secretive because they are in the stage of denial, people who don't know what to do because in their country they have no medication ... I mean their dentist doesn't want to see them just cause they have HIV. It has opened me up to the world in so many ways! People from all walks of life -- people that who infected and affected and people that have nothing to do with our community -- just want to learn or support my fight!

Well I added someone recently! Very nice girl, she is also positive. So, I have no hard feelings towards her, even though I vented in my status on Facebook about the stigma and why we had to fight it. I mentioned her inbox but of course without mentioning her name, etc., etc. The message said: "I'm sorry to bug, but it's been brought to my attention that having you (Maria HIV) as a FB friend on my normal page is making a few HIV friends nervous. Do you mind if I delete you and FB you on the ******** Private Group?" I'm so disappointed in this request!!! How can we educate if we ourselves can't look in the mirror.

So, I removed her to save her the trouble! I felt bad for her! Felt like she was being put on the spot by no other than HIV-positive people who were uncomfortable with my name on FB (MariaHIV). I was shocked. The response to my status from everyone -- infected, affected, not related to the cause -- was overwhelming! They were angry at her, but I don't fault her; number one: she just added me, number two: they have been her support system for a longer time I guess. But if you really think about it, if we are stigmatizing ourselves, what can we expect from others?? I mean I had HIV negative people telling me "Maria, I am proud to be your friend!" And, as I told them: I will never stop! I am in it till the end! No matter what I have to deal with! We have to all FIGHT STIGMA! It is a shame that with almost 30 years of this illness and we have this type of stigma! Within our own people even! And don't get me wrong, I am not talking about disclosure here! I know some people are not ready, or they have children, etc., etc. I am talking about just a name on Facebook! You can't have a friend on Facebook that has HIV in it!? I mean that is terrible. I can only imagine the fear, shame that they go through. So this lady wrote me again after I removed her and told her not to worry that she would always have me through inbox ... and she wrote again, telling me for her to be able to invite me in this so called private group she would have to befriend me again, that she didn't want to lose me and she didn't care who she lost in the process. I felt really bad, but I just didn't want to put anyone through that again, re-adding me ... so she requested me, and I have not accepted. Not because of her, but because of the people that who uncomfortable and her friends. So, that was that! And I moved on!

Lisa and Maria at the Miami AIDS Walk.

Lisa and Maria at the Miami AIDS Walk.

I had an awesome time over the weekend! It felt awesome to walk in the Miami AIDS Walk with my partner, Lisa! She is so supportive and we met so many wonderful people! And we met up with old friends! It was beautiful! But I feel it needed more! More passion ... especially with the crisis that is going on with ADAP and the STIGMA we still face! There are so many HIV positive people in Miami and I just wondered where is everyone!? Don't get me wrong -- it was an awesome event and many people went! But I guess I always want more! I want those Larry Kramer times! Where we were fighting for our rights! Our programs are being taken away ... the medication! The stigma! The minimizing of the disease! Still no cure after almost 30 years, ignorance, lack of education!!

Which leads me to my next inbox! So I guess I have to get use to it! I requested an older lady on Facebook. I think she is a writer and talked about praying for people that who discriminated against, etc., etc. I really don't remember where I found her??? So I check my messages and this is what it said:

"Ok, I am new to this Internet and I was told that chatting wouldn't show up on the 'air your dirty laundry.' Even though it doesn't matter to me, it does matter to my children and everybody that I haven't talked to in 20yrs. Till last week just read that, hell of a way to get called out so if you could remove me off your friends list, thank you."


I don't know the lady. I'm like, "what is she talking about!?" And saw she had like 32 friends. So, I realized, of course when she added me, it shows in her wall. She added MariaHIV which meant that everyone could see this! Again stigma! People probably told her "why did you add that person!?" And if you click on my name, my bio is right there, my story about being HIV positive, and also about my lifestyle! Oh well! I just responded to the older lady in a very nice way: "I am sorry ma'am, but I don't know what you are talking about? I have almost 900 people in my friends list. I am here to fight HIV/AIDS stigma and create awareness so no one has to go through what I have been through in these 20 years. I will remove you if you like. For the future, when you want to remove someone, it's on your left side and it says 'unfriend.' God bless you, and no hard feelings!"

And that was that. So you see, my friends, we have to continue this fight together and one day we will be free of the stigma. I really hope so. My birthday is coming up April 11, yay! And one more year with this illness! Planning to be in a beautiful place by the ocean like I love it! With my Love. Wishing everyone Peace and Love!

Until the next time,
Maria T. Mejia

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This article was provided by The Well Project. Visit The Well Project's Web site to learn more about their resources and initiatives for women living with HIV. The Well Project shares its content with to ensure all people have access to the highest quality treatment information available. The Well Project receives no advertising revenue from or the advertisers on this site. No advertiser on this site has any editorial input into The Well Project's content.
See Also
Spotlight Series: HIV Stigma & Discrimination
What Does HIV/AIDS Stigma Look Like in Your Life?
More News on HIV Stigma and Discrimination

Reader Comments:

Comment by: viswas (india) Sun., Oct. 16, 2011 at 2:40 pm UTC
awesm realy touched my heart. . .hapy b'day dear. . .all wishes of mine
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Comment by: Justin B Terry-Smith (Laurel, MD) Tue., Jun. 21, 2011 at 2:36 pm UTC

I got the same thing when I came up with Justin's HIV Journal. Don't sweat baby YOU ARE DOING A GREAT SERVICE AND I LOVE YOU FOR IT. I'm in your corner boo, and you know this. WHO I GOTTA BEAT UP.......WHAT. j/k


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Comment by: Maria (Miami) Tue., Jun. 21, 2011 at 5:15 pm UTC
awww My Justinnnnn!!! hehheheh I love you! and I know you got my back!

Comment by: mahesh H (india) Tue., Jun. 21, 2011 at 12:04 pm UTC
maria, we are with you..great social attitude..
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Comment by: Maria (miami) Tue., Jun. 21, 2011 at 5:16 pm UTC
Ty so much!

Comment by: Baatseba (Centurion, South Africa) Sun., Apr. 17, 2011 at 6:14 am UTC

Thank you very much for sharing your story openly, i always say if we dont talk about HIV/AIDS who will. Please continue spreading the word. The sruggle continues, if ther are still people out there who are rejected because of their status, are afraid to access treatment because people are going to discrimninate against them. by all means SPEAK UP, and i realise that the same goes for Me
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Comment by: maria (Miami) Tue., Jun. 21, 2011 at 5:16 pm UTC
YES! I will speak up!always! till I have no more breathe in me!

Comment by: naina (oakland ca) Fri., Apr. 15, 2011 at 6:33 pm UTC
Thanks for doing what you do, Maria! Keep up the good fight!
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Comment by: Maria (Miami) Tue., Jun. 21, 2011 at 5:17 pm UTC
it is My mission and Duty! xox

Comment by: MoniqueDionne (Cleveland, OH) Tue., Apr. 12, 2011 at 7:21 pm UTC
I think it was wonderful how you handled both situations with positivity and kindness. I do believe that some people still are not in a place in their lives where the opinions of others don't matter. Continue to be you (and do you lol) Your determination to continuously get the word out and educate is great.
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Comment by: Maria (Miami) Thu., Apr. 14, 2011 at 12:34 am UTC
Monique! I try to handle these situations with love... I will continue to fight till the end :) and i will always be me! ty again :) love and light!

Comment by: Barnaby (Plano, TX) Mon., Apr. 11, 2011 at 2:39 pm UTC
Itís been 30 years! We are long overdue for a cure! Please support re:solve AIDS and the Chronic Disease Fund.
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Comment by: Maria (Miami) Thu., Apr. 14, 2011 at 12:33 am UTC

Comment by: Angelica D. (Oklahoma) Sat., Apr. 9, 2011 at 4:24 pm UTC
I am a part time secretary at a private school here in my town. Needless to say my Facebook account can be a problem and I have to tone things down every now and again as not to offend parents etc. But you being on my Facebook page would be a true honor! Education needs to come to uneducated people in whatever form it can. You have no idea how many conversations your name might have encouraged in families and between friends. I don't know you but I am proud of you for taking a stand. My name is Angelica and I'd love to be your friend!!!!
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Comment by: Maria (Miami) Thu., Apr. 14, 2011 at 12:33 am UTC
Angelica! your words made me smile :) ty for having me as your friend :)

Comment by: aaron m aker (Poland, IN) Fri., Apr. 8, 2011 at 9:07 pm UTC
Thank you Maria!!!! Please don't let these people stop you in this fight. I have personally removed several people from my FB friends for the simpal fact they did not like my posts I put up, but you know what ""I DON'T CARE"". I'm like you I'm in it to the end no matter how many I lost as friends. Again your blog is right on the money and still shows the feelings of most of mankind.
LOVE YA GIRL KEEP IT UP....... Aaron Aker
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Comment by: Maria (Miami) Thu., Apr. 14, 2011 at 12:32 am UTC
dear! Aaron you are a wonderful person! and you always support me! ty ty ty!

Comment by: Andrea de Lange (Sherman Oaks, CA) Fri., Apr. 8, 2011 at 4:04 pm UTC
(I forgot to add my name & location, which I'm happy to have posted)
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Comment by: Anonymous Fri., Apr. 8, 2011 at 4:02 pm UTC
It's funny how some people still stigmatize HIV; the older woman who prays for people who are descriminated against, either doesn't include HIV on that prayer list, or she's a total hypocrite for turning around and descriminating against someone who has "HIV" in their screen name!! As far as the other person concerned about her HIV+ friends being nervous if she adds a friend with "HIV" in their screen name...are these friends of hers for real? She needs to show a little more assertiveness towards her friends, regarding their insecurities...and/or she needs to address her own feelings about her HIV status. Maybe she had second thoughts about having someone with HIV in their screen name, on her friend list. In any case, I feel like for her to survive the physical, emotional and spiritual challenges that come with an HIV+ diagnosis, she needs to start having a little more backbone!! That may sound intolerant of me...but I know about real HIV descrimination - having been diagnosed in 1987 - the peak of HIV hysteria, and becoming an activist and educator anyway. It has been difficult enough to make headway through the descrimination from the uninformed HIV negative population, that we definitely don't need any more resistance from within our own community. Speaking of the HIV neg. community, this includes my Husband, my best friend, family members (younger bro. excluded), and close friends -- who have shown me the greatest kindness and support throughout these 24 years!
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Comment by: Maria (Miami) Thu., Apr. 14, 2011 at 12:31 am UTC
Andrea I so appreciate all of your words! ty!! xox

Comment by: Anthony Johnson (Fort Lauderdale, Florida) Fri., Apr. 8, 2011 at 2:09 pm UTC
Hey there Maria. I understand your frustration with the stigma and ignorance that is still in the community (on both negative and positive individuals) this is a never ending battle. Hopefully a time will come that HIV is not a "four letter word" and can be discussed openly and honestly is ALL societies. Until that time, people who are open with their status like we are and our supports must continue to fight the stigma and talk about HIV/AIDS and the issuse that come with it. Do not be hard on the girl or the woman for they are just frightened of a little thing called HIV. Hopefully they will learn to fear it and us, and come to terms with it over time. Until then just keep doing what you're doing and showing them that we are all just human beings fighting for the right to live.
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Comment by: maria (Miami) Thu., Apr. 14, 2011 at 12:31 am UTC
Ty Anthony for your words! and yes we must FIGHT STIGMA!

Comment by: Maria (Miami) Fri., Apr. 8, 2011 at 1:45 pm UTC
hello Sanju! It is my pleasure and passion :) ty for reading :)
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Comment by: Sanju (MA) Thu., Apr. 7, 2011 at 4:56 pm UTC
Great blog post, Maria! Thank you for all of your effort in creating awareness and fighting stigma. And happy early birthday!

Sanju Poudel, Community Research Initiative
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Time to Show My Face and Take the Stigma Away

Maria T. Mejia

Maria T. Mejia

I am a Colombian female who lives in Miami, Florida. I've been positive for 20 years. Although almost all my life I've been in long-term relationships with HIV-negative men, I am happily married to a woman who is wonderful and caring. We have been together almost three years and she is HIV negative. I have no children but we will look into having! I am an activist, a peer educator, a caregiver. I volunteered for the Red Cross in education for the Hispanic HIV community and also the American community. I was a pre- and post-test counselor. I have spoken in many conferences and done a lot of outreach in the community, especially in the schools for prevention and education. It is part of my everyday life to educate everyone I can on this subject. Being HIV positive is nothing to be ashamed about! We are strong women, and we will take away all the stigmas slowly but we have to open up.

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Read more blogs by women living with HIV/AIDS at "A Girl Like Me"

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