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Stigma Within Our Own HIV Community

By Maria T. Mejia

April 6, 2011

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."

SO I'M LIKE WTH!??

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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