MY NARRATIVE: Amanda/27. Barbados

So, are you open about your status?

Yes and no.

Could you please explain a bit?

Depends on the circumstance. My policies is don’t ask don’t tell unless it’s necessary.

In that case what name would you like to use for its publication?

You can use my middle name Amanda.

What’s your age? And when did you got infected?

I’m 27, I was diagnosed at 15.

How did you find out, and what was your first reaction?

I cried then, I went crazy. I wanted to kill my boyfriend, then I got depressed and over eat because I thought I was going soon get skinny and die.

What things changed because of HIV?

Some things change for the better because I took my goal more seriously, because I thought I didn’t have much time left and there’s so much I wanted to do. But also I had a lot of setback in terms of finding work and studying because of doctor’s appointments and when meds I was getting sick all the time. And I often neglect myself because it’s hard enough trying to prove yourself as a woman. Much less a woman living with HIV. Even though everyone around doesn’t know, I often feel like I have to make up for having HIV.

Have you faced any stigma and/or discrimination? Can you share a specific experience?

Most of the stigma and discrimination I experienced I was a bystander when people were saying thing about those “aids people” or those “sick people” not knowing I’m one of them. Some people in the social services department view “us” as just sitting around waiting for handouts. The most hurtful is when you get close to someone and you tell them and they run from you, or stop speaking to you, or bathe in Clorox because you touched. Or even worse, you’re in a relationship and your significant other wants you to do things to them sexually (eg. oral sex) but they don’t want to because of “your condition”. I’ve had people saying, medical professionals included, “why would you want to punish yourself and an innocent child by having a baby”.  Then the family members who fuss too much, and then those who don’t care at all, and it seem they trying to kill you faster.

How would you describe yourself?

I’m hardworking person, a student, a business woman, a sister, a daughter, a mom, even though I’ve never given birth. I’m kind loving sharing but at times very guarded and withdrawn because life changes when people know.

How are you engage in the HIV response?

I’ve been in too many support group meetings. I’ve often volunteer at the food bank giving out hampers or hosting at the Christmas parties for people living with HIV. I did massage this year for women living with HIV, and there health care providers free of cost for Valentine’s Day. And visit other women whom I know they’re positive, if they become hospitalized and offer an encouraging word or just stay and keep them accompanied. When I’m working at the hospital I trying my best to get assigned to the patients who are like men make sure they have an extra special day and give them information on how best to talk with their doctors and who to take care of themselves when they come out.

What do you dream of?

I want to have my own preventative healthcare center where people living with HIV get special preference. I dream of one day getting married and having the kids I wanted before this happened. I also dream of the day when the fear associated with HIV is like diabetics it something you don’t want to have because of the end results, but if you do, so what. Deal with it, and move on. I believe that the HIV response should be more focused on living with it and the stigma and discrimination; suicides, violence depression, substance abuse and loneliness.

What would you say about your sexuality?

When I was first diagnosed it went away. For almost a year I felt dirty, like some had raped me again, but this time I gave them permission. But I came back stronger than ever, but I keep it under wraps because regular relationships get complicated after sex. Discontent relationships are even worse. And almost all of the guys I met who are positive, are either gay, bisexual, way older than me, or have serious issues (eg. unemployed, uneducated, no ambitions, crazy jealous and abusive).

How do you see HIV in your country?

I see it as a hustle. For some people some people try to get what they can get in the name of helping us poor people. But the bigger heads aren’t concerned about the individual, once condoms and medicine are selling. Who cares about the physical and emotional torment and ostracism we received because we were diagnosed with something. Funny enough in my country our population is very sexually active, but they pretend like there not, until there’s a problem.

Advertisements

MY NARRATIVE: R. Micky/30. Jamaica

“I am 30 years old, and got infected three years ago, at age of 27. I found out by doing a random HIV test and I was astonished, I felt as if my life was over. I became more conscience of what I consumed, especially alcohol, also started having protected sex. Because of HIV, I became more self-driven and determine to become someone.

I became pregnant last year and all was good with the nurses and doctors until I gave birth. The nurse who delivered me had an attitude, at one point, when she came to do my vitals she asked me to placed my hands on my vagina and to don’t touch the equipment. This past march, my baby died. She was premature and have hypertension.

HIV in Jamaica has come a far way and it can only get better. There are lots of support groups and treatment sites here. I attend the chares clinic and I can truly say they are the best service, with you, the patient, in mind, with a friendly and non-discriminating staff.

I am a positive and strong woman, I believe that I can and will make a difference in this life. Failure is not a part of my vocabulary. My dream is to make my mom proud before her life on earth has ended. I intend to open my own private school and daycare.”

Querido VIH III.png

 

 

Vertical

Vertical” was originally published in spanish in january 26th 2016 on Roja Vida by L’Orangelis Thomas Negrón, member of ICW’s Chapter of Young Women, Adolescents and Girls, living in the Hispanic Caribbean, Puerto Rico.

This is the first time I write about The Cure for HIV in my blog. I never before had written on this subject and I had, and still have, some contradictory feelings and thoughts, but things have happened in recent months and I think it’s time.

As you may know, I grew up with HIV and no, I don’t know what  it is live without it, but not for its time in my body, but the time I’ve been aware of its existence in me (since I’m 8 years). HIV is part of the group of things that construct my identity as a human being on this earth and its societies, and has predisposed and put me in situations that, in other ways, possibly haven’t occurred. For better or worse, many of the most important and decisive things in my life, HIV has had an influence. From my closest friends, my most significant works and experiences, thought the way I see the world and understand it. All this and more is due to HIV, and having the thought that the HIV would no longer be part of me, scares me and gives me that loss feeling. It is a kind of Stockholm syndrome, HIV being my kidnapper.

The cure for this syndrome, in my case, I think it would be to realize that there are hundreds of young people who have no access to medication or who simply don’t take it, for any reasons, and they are dying. That doesn’t matter how I may feel when we talk about the lives of hundreds. Currently the only or main alternative we have to keep the virus low, is to take medication, but what do we do with those who no longer have more options? What do we do with those who are weary and tired? I have no answer, but what if we talk about a cure?

The vast majority of global and national strategies are based on the medicalization and condomization of people with HIV or who are “at risk” to reach the “end of AIDS“, not the End of VIH by the way. So, we have strategies that talk about “detect“, “treat” and “suppress“, but not necessarily speak of access to mental health, sexual pleasure, institutionalized and social stigma, free access to information and human rights. People talk about reducing viral load, but suddenly many people make it sounds as easy as lowering the volume of the music, when between the viral load and strategies, are human beings who carries the virus in our blood and medication by our mouths.

Treatment now is prevention, and no, I don’t speak of Truvada as PrEP. I speak that once you’re undetectable, the possibility of transmitting HIV decreases enough to not infect someone else, but God, Buddha, Allah, Pachamama, Krishna and Changó keeps you from having sex without a condom!! It sounds cute “Treatment as Prevention“, but if people will call us irresponsible when we are undetectable and have sex without a condom, so why we even use both words in the same sentence? And I don’t really think it’s because of other STI or pregnancy, because usually strategies are designed to make us less infectious.

Getting tired for a while is valid, and also getting tired indefinitely. For more wishing that people have on young people who grew with HIV, to be 100% adherent, at the end of the day, the ones who places in their mouths the pills and swallow them, are us. When we speak and say “My Body, My Territory” is not only to decide whether or not to abort, it also comes to taking medication or not, going to a protest or not, having sex or not. It’s the right to have alternatives, availability, accessibility and the power to decide on them although the decision is appropriate, correct or NOT.

Not every young person who doesn’t take the medication, do it on purpose or in a conscious manner. Not all the young people who don’t take medication, do so because they have surrendered or because they are irresponsible. The desire to live, to be healthy, to have goals and dreams, is NOT synonymous of adherence. If I think about this, with this co-dependent mindset, it makes me see ourselves as machines of taking medication, it’s makes me feel that we were born to take medication and that no matter what we want, HIV is what determines and decides what is possible for us and what’s not. This kind of view, also makes me feel like if I’m resting us humanity, and that we are nothing more than a diagnosis. And this does NOT mean that I am against medication.

Willing to live is human, just as willing to be healthy, to have goals and dreams, regardless of a diagnosis. Good and bad things will always happen, and there will always be barriers, and because of this reason, it is necessary to develop new strategies and ways to maintain good health and quality of life. Strategies that are based on dignity and participation; shifting the power “over“, for the power “of“, “for” and “with“. Inclusion, because integration is not enough. Empowerment to speak out, instead of lying every time we go to the doctor when we are not adherent, because we don’t want to hear the nagging again (I’ve been listening since he was 15 and has not changed doctor after doctor). Including medication, but also advocate for a cure.

Including medication, but understanding that we are whole beings, and that HIV does NOT have a Velcro that you can take out to treat without having to deal with the rest. Including a cure, which currently does not exist (but that doesn’t mean we won’t ask for one), but it would be a final solution to the deaths among young people. As someone who has grown up with HIV, I get tired and always has complications with adherence. However, I know my body and I stay aware of how I feel, and having this consciousness supports me. But consciousness is not all, I have to keep this present in my mind all the time and that is no simple task, even after all this time. If anything has supported me is to be honest with myself and my health care providers, recognizing which my barriers are, and from that honesty with myself, look for my true alternatives from my reality.

Even if we don’t like it, speaking of adherence it is no longer enough. Much less when we speak of vertical transmission, that although the incidence has declined, those of us who still here, sometimes are the ones having more difficulties, and no wonder. A lot is required, a lot of support, mind and heart, because sometimes it feels like we are in danger of extinction.

#WhatWomenWant

Roja Vida

For a couple of weeks now, I have been collaborating with the campaign #WhatWomenWant. I tweet and retweet many stuff, but never posted an original message. During this days I have been reading “What Women Want” so much that I actually start thinking, what do I want? Like, what do I really want? It was hard to think about it, because sometimes you have in your mind a lot of recycled statements and slogans that you just forget about what you want for you. But this last weeks I have been so full of the “High Level Meeting”, media, university, elections, work and economic troubles, that it was impossible to think about what I really want, and this is it:

What I want is the guarantee that I will be in peace, I want mental health. I want to feel that this is not the wrong decade to be a…

View original post 771 more words

HIV Dilemma

Hello HIV!

Pull up a chair and sit down.

There is something I must say to you;

So listen as I share with you.

 

HIV you entered into my life because I opened up the doors,

Times past you not only made me sad, you made me mad!

ART you have me on,

Causing my family to stigmatize and scorn me.

Word circulating causing people to discriminate me in my community.

 

Now I accept that you, HIV, won’t leave

So to you I will cleave.

You almost took my joy away;

But that was then and this is now.

 

HIV you no longer scare me!

Body fluids I choose not to share.

 

HIV come celebrate along with me!

On World AIDS Day you make me a celebrity…

Grandma Goodaz! I am well you see.

Fabulous and living MY life to the fullest with you my partner, HIV.

Poetry Piece By Sharon Cooper