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Stigma within our own HIV community

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, but because I wanted to attract people to it..so by now I have met wonderful people from every continent! Awesome advocates, activists, people that are recently diagnosed and long term survivors like myself..and everything in the middle 🙂 many people that are suicidal and feel like their life is over, some very secretive because they are in the stage of denial…people that 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 are infected and affected and people that have nothing to do with our community, they 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 in 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. xox

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 that 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 are uncomfortable and her friends..so that was that! And I moved on!

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 then! I requested an older lady on facebook..think she is a writer and talked about praying for people that are 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 & 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 IM 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 bday is coming up april 11, yay! and 1 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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6 Comments leave one →
  1. Dona permalink
    April 6, 2011 2:02 pm

    Wow! Awesome post!!!
    I am half out about my Positivity…there are those who know, the ones I feel Inclined to tell and then there are those that I don’t feel inclined to tell…
    Part of me wants to say “f” it and shout it out, loudly and another part says to wait…
    I am a strong woman and extremly confident in all parts of my life, except in my HIV. I tell myself that I don’t care what people think…and part of me does care…
    I am struggling with my identity in the HIV world…I want to change lives and educate~when did you go public? How did you feel when you did? I am teetering on the edge and nearly ready to plunge head first into coming out of my HIV closet…

  2. Vickie permalink
    April 6, 2011 2:24 pm

    Maria,

    Love your post. I understand the frustration regarding stigma in our own community. I have always been out about my status. For the past 26 years I have witnessed stigma from all groups: from others who are positive, from neggies, from professionals, from doctors, from nurses, etc. I accept who I am and what I have. Most people accept me but there are some who can’t, don’t, and won’t. And that is okay.

    I sent you a friend request, I hope you respond becuase I think you are an amazing woman and you have much to offer the world.

    P.S. Are you a memeber of poziam.org? Great HIV social networking site!

  3. Marilyn permalink
    April 6, 2011 2:28 pm

    Once again Maria – you amaze me. All I can say is WOW. And yes there is still way too much stigmatism out there and not enought education. I feel we all have a responsibility to teach others. I myself do better on the one on one personal side. When I get to share my story with someone on a personal level and tell them about the world of HIV I am more comfortable. I hope and pray to get to the point of one day being able to share with more than just one at a time. I admire your courage, your strength and your passion. Two years ago I wrote a book called Faith to Cope. I originally did it for my kids/grandkids but then also shared it with other people. I am working towards beginning an online support group based on Faith for anyone dealing with terminal illness or caregivers dealing with terminal illness. I strongly believe not enough is being done for people who have just learned of their disease and we who have carried this “torch” can spur others on and encourage them.

    I sort of lost inspiration in working on this project, but reading your post and feeling your passion has awakened my desire again.

    Thank you for your openess and sharing your story!!

    Marilyn

  4. April 7, 2011 11:52 am

    Dear MariaHIV, what a disappointment for you and for all of us who fighting a silly stigma. It’s silly till it smacks you in the face. Well, I’m proud to be on your facebook. I’m even prouder when my adult son says “mom you’re such an activist, you’re all over my page”. And he says this with pride!

    Isn’t this what we want for our children? To raise proud and courageous children; BE proud and courageous. Otherwise we’re just keeping the stigma circle spinning.

    GHANDHI said: If you hate injustice, tyranny, lust and greed, hate these things in yourself. peace, Gisele

  5. ANNA permalink
    April 7, 2011 12:50 pm

    Maria YOU ARE NOT ALONE keep it up ,I LOVE YOU,God LOVES you more don’t let any ony discourage you in stigma fighting,its a war !! and lets join hands to fight stigma God Bless you my dear

  6. mariateresa1111 permalink
    April 7, 2011 4:23 pm

    Hello everyone! I want to take the time to let you all know how thankful I am for liking what I write and to inspire someone is the biggest honor..all of you inspire me and it comes full circle 🙂 I try to write from my heart and soul and I am glad you all feel me and my passion 🙂 I am ok with everyone adding me in Maria Hiv I have almost 900 people and growing 🙂 many groups of support for us there 🙂 and resources!!
    @ Hello Dona! go for it! dont think twice you are there!! I went public in 2001 in a small setting..as an hiv eductaor in a hospital here in Miami..and for the red cross..diff organizations here in Miami! but in a global level like now! was my new years resolution! for 2011 🙂 read my blog why I decided to show my face after 20 years 🙂 there I explain what happened! xoxo @ Vickie ty for requesting me! and ty for your kind words! I feel you 100 % it is what it is 🙂 we must cont the fight..and yes I know robert and poziam 🙂 he also blogs with me in thebody.com 🙂 very nice person! xox @ Marylin! congrats on your book 🙂 that is what I want to do next 🙂 and I am so humbled by your words! please never let the light go off! even though I have been there where I think I lost my inspiration to write or fight cause I get tired 😦 but I pick myself up and dust myself 🙂 and here I am xoxo @ Gisele what beautiful words!! ty for being my facebook friend 🙂 it is an honor! xoxo and yes you are an amazing woman! @ My dear Anna! ty god bless you also! I will continue till I am dead! and after that from heaven I will continue praying for us love to you all xoxo
    Maria Mejia

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