Category Archives: Stigma

HIV: Through a Different Lens

Testing positive for HIV is a hard pill to swallow, no doubt. As you come to terms with losing the life you once knew, questions race through your mind, “How did this happen? How could I let this happen? What am I going to do?” If you’re anything like me, you’ve probably been called a liar, have been shunned by “friends” and family, and have had job opportunities taken away- all from disclosing your status.

But what if you’ve been living with HIV all you life? The old life others have had to let go of never existed for you. I wonder if anyone ever stopped to think about the stigma for someone like me. For example, Is it easier to live with? Harder? How does a young child comprehend what HIV is? How does a child deal with their diagnosis, how does their body react to the medication? Do they internalize stigma much sooner or is it easier for the unformed mind of a child accept their diagnosis much easier? Are people born with HIV more likely to develop a resistance? When HIV is discussed, it’s typically geared toward newly diagnosed individuals. However I believe people like myself offer a unique perspective when describing their diagnosis and outlook on life.

I was five years old when I learned about my HIV status. I also learned from an early age how important secrecy was and how deep-rooted confusion and irrational hate could be… even from your own family members. You could say that I’ve never lived a “normal” life; judgment and stigma have always been unwelcomed friends of mine. But who ever lived a normal life anyway, right? While my life has been filled with many tribulations, I’m happy that I’ve been able to meet people who are compassionate and understanding. I’ve had a lot more time than most to come to terms with my diagnosis, and I have grown to understand that ultimately the world needs more education.

I understand that being born with HIV can tempt someone to harbor anger and blame, and that’s totally normal—I don’t blame you. Still, I want to show that just because of your diagnosis, you are not “different” and there will always be someone who will listen to you, who will believe, and who will accept you. The most important part is to believe that your life is not over and that you can make a difference in your life because the only opinion that really matters is your own. Look at me, the person who was once labeled by so many people. I’ve taken power into my own hands to label myself happy and proud of all that I am and have accomplished regardless of HIV: a young woman turning 27 in August and a son that is healthy and HIV-free, could you blame me? 🙂

Hooray, it’s National HIV Testing Day! 

So why is it important to get tested? There can be so many different reasons NOT to go get tested and the reality is many people don’t believe that they are at risk for an HIV diagnosis. You may be thinking, “I don’t participate in that kind of lifestyle, I work on Wall Street, or I’m married, etc.”

But you see there’s this stigma surrounding HIV- that diagnosis is directly related to behavior and lifestyle choices -as if some people do not “qualify” for diagnosis and are immune to HIV. This is not the case. The ugly truth is almost everybody is at risk for an HIV diagnosis. If you’ve ever had a sexual relationship, are currently in a sexual relationship, are pregnant or planning to become pregnant, you might be are at risk. Understand that HIV is a health condition, not a punishment for behavior.

Now let me ask you a better question… Are you ready to go and get tested? If you’re answer is no, then I’d say that’s even more of a reason to get tested for HIV. The bottom line is it’s better to know than not to know, believe me.

There are lots of ways to prevent the transmission of HIV. You have PrEP*, condoms, abstinence, the list goes on, but the very first step is knowing your status. When you don’t know your status, you run the risk of transmitting HIV to others, or even worse, dying prematurely from lack of necessary treatment. But on the flip side, when you DO know your status you can begin treatment sooner and with consistency, live a long, healthier and productive life, and prevent transmitting the virus further.

So why not get tested or retested? When we examine the issue at its core, what’s really holding people back from knowing their status is fear. Please know that it’s absolutely normal and okay to be afraid, but you can’t let that stop you. It’s your health and potentially your life at stake—you have to take control!

Someone once told me, “If I had known my status earlier, I would not have been diagnosed with AIDS. That’s what made me get tested.”

The bottom line is, it’s not all about you. Think about your friends, family, and partners; they are affected when you don’t know your status and we’re trying to get to zero! Now that I know my status, I would love for you to know yours as well because Silence=Death. So, don’t be afraid and don’t be ashamed. Get tested, everybody’s doing it! 🙂

*PRep is a medication for those who are not living with HIV, but are at risk. It is said to be estimated at 99% effective when taken as prescribed, in preventing the transmission of HIV

Local Testing Sites-Alachua County:

Not in the Gainesville/ Alachua County area? Check out the website to find a testing site near you: https://locator.hiv.gov/

Some of the events will feature counseling and testing, education, free condoms, and referrals to other resources in the community that deal with HIV/AIDS issues.

Wednesday (6/27/2018)

GRACE Marketplace
3055 NE 39th Ave

Time: 8 a.m.-12 p.m.

The Heart of Gainesville Thrift Store
125 NW 23rd Ave.

Time: 3-6 p.m.

HealthStreet
(Please call and schedule an appointment and be sure to arrive 30 minutes earlier if you are not already a HealthStreet member (You must become a HealthStreet member (FREE) for the free testing)

2401 SW Archer Road
Time: 11 a.m.-5 p.m.
Phone: (352) 294-4880

Friday (6/29/2018)

University of Florida Health Family Medicine
1707 N. Main St.

Time: 5:30-8:30 p.m.

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Citrus County:

Wednesday (6/27/2018)

Florida Department of Health
3700 W. Sovereign Path, Lecanto, FL 34461
Time: 9 a.m.-3 p.m.
Phone: (352) 527-0068

“As an advocate for Women living with HIV, this is very close to my heart. In this day and age, this test can change your life! You can live a long and great life as with many diagnoses. We must end the stigma attached to so many medical conditions.”

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Ways That Help Me To Be Free From My Inner Enemy

confidence-wordsI battle with low self-esteem because of things I have been through in my life, or things that have been spoken or done to me.

I never knew how to break free from it, I always felt less than anybody around me because of the way I looked or how I spoke and all I wanted was to feel love. I was finding love in the wrong places or things. I was looking for a way out, wanting to know how to escape everything within me and learning how to love me.

These are ways that help me to be free:

  • Taking responsibility for my own life and decisions, which can be hard at times, but I have to do it.
  • Forgive, which is a choice, not a feeling. Never give a person or something so much power over me that I choose not to forgive.
  • I no longer rely on someone else’s validation to feel good about myself. When I started taking responsibility for myself, it began to build my self-esteem and stability within and gave me hope. I started feeling good about myself.
  • Self-esteem problems can damage many important parts in my life, like relationships, ambitions, achievements, and health when playing the victim role.

I never want to be powerless and helpless another day in my life. I lost many years of my life by being powerless and helpless. I was giving someone else command over me, and allowing them to have control of my responsibilities and relinquishing my God given power and will.

I replace a negative with a positive by:

Changing my mind to what can go right instead of wrong. I learned the mind can only think one thought at a time.

  1. Using affirmation.
  2. Using humor and fun or being around someone that makes me happy.
  3. Reminding myself that the negative thought that I’m thinking is only negative, it has no power other than what I give it.

Most of all fall in love with me!

 

 

 

Stronger Than HIV

 Stigma is a cancer. If we allow it to, it eats at your soul. We can’t allow stigma to take over or overshadow us as individuals. HIV is such a small part of our DNA. We were who we are before we contracted or were born with HIV. It is nothing that is our fault and we can’t let it overshadow our goals. HIV is somethistigmang that moved in, uninvited. We have to be stronger than HIV.

 
I am a mother. I am a grandmother and great-grandmother. No matter how great the obstacles we face, God never puts too much on anyone that can’t handle it. Believe in yourself. Look in the mirror and tell yourself that you love yourself.

Put HIV in its place and love your life. Continue to live your life and be confident with the woman that you are. I was diagnosed 29 years ago and today I stand before you, undetectable.

Preferred Language 101

We use language in everything we do and the language that we use may allow others to be stereotypical when it comes to us who are affected by HIV. People copycat the language that is used, first by us, and then from the media, doctors and other people that we admire.

Most of the time language is used incorrectly, sometimes on purpose and sometimes by accident -thereby lack of education. It also carries stereotypical factors and concepts.  This language alienates those affected by these messages.

Since the beginning of HIV and AIDS we have seen and heard stigmatizing messages, which change the way we feel about ourselves.  We say we are trying to improve this, but people are still doing the same thing. In order to use better language, we must become more educated and share what we have learned. Terminology is important–from the words we speak to the illustrations that we paint.

Recently, many groups have surfaced that explicitly discuss new and upcoming HIV-related terms. According to some articles, “Preferred Language” helps remove judgment from the individual and rather, focuses on the individual.

There are some words that people use that may be demeaning and cause stigma, and then there are the “Preferred” words that may be used instead that are less harmful, with a meaning that is more understandable.  Try changing your terminology, which can change the way you think.

Stigmatizing words Preferred Language
HIV patient Person living with HIV
Died from AIDS Died from AIDS- related illness
HIV Virus  HIV (otherwise it is a redundant use of HIV)
Prostitution or prostitute  Sex worker or sale of sexual services
Became infected Contracted/Acquired

 

Can you think of some stigmatizing language along with its ‘Preferred Language” that can be used instead? 

For further information, check out the discussion in Poz:

https://www.poz.com/article/vickie-lynn-valerie-wojciechowicz-28210-9008

or more terms at:

http://www.unaids.org/en/resources/documents/2015/2015_terminology_guidelines

 

Finishing School With HIV

Living with HIV presents its own sets of challenges, but when you add school and homework to the mix it can make life even more difficult. I had to take 2 years off of school when I developed HIV-related cancer, non-Hodgkins Lymphoma, and for the moment HIV had won out against my determination to finish school. Beating the cancer was challenging in itself, and I was really too sick and tired to even think school-related thoughts. After I went through chemo, surgery, and had been in remission for some time, I started to think about school and how to pick up where I left off. I was a year in remission when I re-enrolled to finish my A.A. degree and get my life moving forward again.

My point is that everybody, especially those living with HIV and other chronic illnesses, can face their greatest challenges and still come out fighting on the other side. You might leave some pieces of yourself behind in that dark time, but everybody has something to live for. For me, that was my family and finishing my schooling. No matter what it is you are fighting for, just remember that there are others fighting alongside of you. Everybody might be fighting for different things, but at least you are fighting!

LTAI World AIDS Day Event

In partnership with the Florida Museum of Natural History the women of Let’s Talk About It (LTAI) held a special event to commemorate World AIDS day (Monday, December 1st). Darcie MacMahon, head of exhibits and public programs, welcomed participants on this special commemorative event. Throughout the afternoon, local community leaders and peer advocates shared their testimonies and encouraged everyone to continue the fight against HIV/AIDS.

The butterfly has been a long standing symbol for the women of LTAI. Just as caterpillars experience a transformation, the women of LTAI have also endured tremendous journeys to become the strong beautiful women that they are today! A special recognition was given to one of the members of LTAI who created a beautiful piece of art portraying the transformative process which many of the women identify with.

The afternoon ended  with a tour of the butterfly rainforest, where the LTAI women had a chance to delight in the beauty of thousands of different butterflies in the company of their peer advocates. This event also marked the launching of the second LTAI magazine, Let’s Talk About It: Put Yourself First, written by the peer advocates of LTAI.

If you would like to read the article about the event published in the Gainesville Sun please click the following link: http://www.gainesville.com/article/20141201/ARTICLES/141209967?p=1&tc=pg&tc=ar

We would also like to share with you the photo gallery of the event at the following link:http://www.gainesville.com/apps/pbcs.dll/gallery?Site=GS&Date=20141201&Category=MULTIMEDIA0301&ArtNo=120109994&Ref=PH&pl=1

If you would like to know more about LTAI and our monthly meetings or how you can get a copy of the second LTAI magazine please let us know in a comment below or give us a call at 352-372-1095, we’d love to hear from you!