Category Archives: Stigma

The Secrets We Keep: Living with HIV

Advocacy, Emotional Health, Stigma, Support, Taking a Stand, ,

Living with HIV creates a lot of doubt in our heads and conversations. Did I get a funny look from a stranger, a clerk, a friend, or a family member? Did I imagine that they moved away from my touch or refused a sip of my drink? When seeing a medical person for an illness or a routine check-up, did they shy away from touching me or avoid providing a procedure I may have needed?

How can we change these thoughts when we can’t change the public perception surrounding HIV? Education may be the answer but we can’t force people to listen or to believe the science behind HIV. We have to keep advocating for ourselves, even within the medical community. We have to speak up more in sharing our concerns.

– Crazy Grandma

Ending HIV Stigma in the Church: A Well of Opportunity for Greater Understanding of HIV

Advocacy, Stigma, Support, Taking a Stand, ,

HIV has plagued our society for over three decades. Many who have contracted the virus have lost their lives and many others live their lives in the shadows of HIV. The fear of the unknown and lack of knowledge concerning the virus has caused a lack of acceptance and societal judgment. Unfortunately, many African American churches operate from the same mentality of societal judgment, even though Matthew 7:1-5 clearly tells us to not be judgmental of others because the same measure used to judge will be measured back to us. Judgment of other’s faults against our own can eliminate one’s ability to exercise empathy and compassion in any given situation.

The reason African American churches find it difficult to discuss HIV in the church is due to a level of fear and the absence of knowledge concerning the disease. This creates barriers for the African American church regarding HIV, and the disease becomes one of the taboo topics that are rarely, if ever, discussed in the church. However, if African American churches are to end the stigma of HIV, they must:

• Accept: Church leaders must accept the responsibility of setting the example, as Apostle Paul did in 1 Cor. 11:1. Leaders must be the example for their members to follow by receiving those with HIV into the church family without any reservations.

• Acknowledge: Church leaders must acknowledge that HIV is a valid disease that may plague some of their members and, through this acknowledgment, a well of opportunities for greater understanding of HIV can be established and instituted within the church. Then the hearts of the brethren can be refreshed (Philemon 1:7.)

• Instruct: Church leaders must teach their followers the truth regarding HIV, and dispel all notions of myths and stigmas that have plagued our society and the church for far too long. It is the truth that will bring light and liberty for all to freely love one another (John 8:32, Mark 12:31.)

When Clergymen and Clergywomen decide to place a high value on the importance of accepting, acknowledging and providing instruction concerning HIV and how it directly affects the church, that is when we will experience genuine transformation within the church.

Guest Contributor
Pastor Hope Drew, Ed.S, M.Th.
Rays of Hope Outreach Ministry, Inc.
Tampa, FL

An Unacceptable Stigma Based on FEAR!

Advocacy, Inspiring Stories, Stigma, Support, Taking a Stand, , , ,

 

People fear what they do not understand. When I first moved to Florida in the ’90s, the HIV stigma was still on the rise; it was heavy and strong. I started looking for a church that I could integrate myself into. I desperately wanted to still be included…to be loved.

When I first found out that I had HIV, the feeling that I would never be loved and accepted had me socially and emotionally paralyzed. Reading my Bible daily reminded me that I needed to surround myself with other believers. Joining a church was my utmost priority. I was happy when I finally found a church where I began to feel comfortable and accepted. But even though we were a church that was like a family, I was still afraid to disclose that I was living with HIV. I listened and watched people’s reactions to certain issues. Many of their responses were not positive. I would sit in my prayer closet and think to myself, “Aren’t we to love God and love people? One of the ten commandments literally states ‘Thou shall not judge!’” I felt so much sadness and anger that those who claim to love God could be so unaccepting to the broken! I thought, “How do some of these people think that they can judge and condemn others!” I poured myself out to God and asked for His peace that surpasses all understanding as I walked through these troubled waters.

After being in the church for about ten months, I got the courage to go to my pastor and ask to speak to him. We sat down and had the conversation I had been secretly dreading. During our discussion, I told my pastor that I was living with HIV. He was compassionate and caring. Although my pastor was not very knowledgeable about HIV/AIDS, he told me that he knew someone else who was living with HIV and connected us with each other.

After almost a year passed, I felt led to ask my pastor about starting a support group. I felt strongly that there were other people who were also having the same empty feeling that I felt with this diagnosis. A support system consisting of others who are facing the same feelings and day-to-day issues could build a greater understanding and draw us closer to God. This was strongly on my heart. The pastor agreed and within a week we had a meeting with the Director of the County Health Department. The director was very hesitant. He was afraid someone would shoot me or maybe even burn down our church! I was absolutely floored! I could not believe what I was hearing! Were people really that scared and cold-hearted to those struggling with this?

Hearing that lit a fire inside of me. I became adamant about creating my support group! I felt led by God in this, regardless of the dangerous repercussions that might come with it. After the group began, I realized I needed to change the name, however, because I could not reveal that it would be a support group for people living with HIV/AIDS. I hesitantly changed the name to something that sounded like an exercise class. I realized that not many people would show up for fear of the stigma surrounding HIV/AIDS. People were literally afraid for their lives! Yes, I said their lives – afraid of being beaten or even killed for having HIV/AIDS! This is what can happen due to a lack of education about this illness! People start to assume and we all know what happens when we assume without the facts. Sadly, I had to close the doors to the support group after just four months.

I am glad I disclosed to my pastor what I was going through back then. I was determined not to let the fear of others stop me from reaching out. I still wanted to support those battling this, and I was determined to educate as many as I could to stop the hate surrounding this stigma. I got involved in other projects surrounding HIV/AIDS and started receiving emotional support at that time. It empowered me to know that I was helping other women and teaching them to embrace and love themselves again. That whole experience made me really realize how badly the world needs to be educated on this illness, including the church. The Bible has many stories of Christ’s love. He never shied away from those with afflictions. He healed the leper, the woman with the issue of blood, and all those with mental, physical, and emotional afflictions. He embraced them in love. If we are to be following His example, we too need to embrace those in all walks of life in love, forgiveness, and mercy.

Believe me when I tell you that in 2021, the sigma is still alive. Our society still needs to learn the facts about HIV/AIDS. As advocates, we must continue to educate the churches. However, we first must continue educating ourselves as advocates on HIV/AIDS. We will always fear what we do not understand. I will leave you with these three final words. Educate! Love! and Empower!

Challenging Stigma

Advocacy, Inspiring Stories, Lessons Learned, Stigma, Support, ,

After I found out about my HIV diagnosis, I was trying to find somebody that understood what I was going through, so I disclosed it to my pastor. I was not necessarily trying to get sympathy, but just trying to find a way to cope without allowing it to affect my Christian walk. I didn’t want to play the blame game thinking, “God, you allowed this to happen.”

During my visit, my pastor said, “It’s okay, you know I dated a woman who was living with HIV. Everything is going to be all right.” I think that was just his pep talk, but still, at that moment, I didn’t want to hear about the woman that he dated. I was going to him for spiritual guidance. I was already crushed, and feeling like my life was over. I was looking for an ounce of hope, to let me know that God allows us to go through things in order for us to have enlightenment. I wanted him to say, “Do not look at the problem, look at what is going to come after the problem.”

Honestly, I felt like his response was the typical thing I hear every day. When I ask somebody what do you know about living with HIV, the response is usually, “Oh my cousin has HIV,” or “I know someone that has it.” I know that’s their connection, but they can’t come and say that they understand, that they know how I feel and what I’m going through if they have not personally walked in my shoes. There are levels to finding the acceptance point of living with HIV: anger, depression, and the denial stage. At the first point, a person may feel like they want to walk off of a cliff because they feel life has effectively changed from that moment on. I think I walked back out of the pastor’s office not feeling any better than when I walked in. It didn’t do anything for me at that time but at least it allowed someone else to know that I was living with HIV.

I was always the type to be at the altar. I loved to sing at church and when I found out that I was living with HIV, I was heartbroken and just felt that I couldn’t participate in any church function. HIV is not something that you can come out and talk about like you’re talking about diabetes or mental health. It’s not a conversation that someone breaks out and feels comfortable talking about.

I remember one time, I had a conversation with one of my friends from church about my health condition and she ended up telling me that if I wasn’t her friend, she wouldn’t want to touch me, hug me, or do anything around me. At that point, it was like radars went up and I was thinking, “What the heck is wrong with you?” She said she has a phobia about people who have been diagnosed with full-blown AIDS (even though we know there’s no such thing). Because I went to her with my personal business, it made me feel diminished and lowered in terms of who I was as a person. I didn’t know how to respond. I had emotions, but I didn’t want to display them. I felt hurt and upset because I considered her to be a friend. So, I just took what she said and I walked away. At that time, being a person living with HIV, I didn’t think about where the other person was coming from. The only thing you think about at that very moment is what they said and how it made you feel, and that they had no idea this could happen to them or anyone.

Stigma is a very difficult thing to deal with because it’s something thrown in our faces from others every single day. I think if we can handle it head-on, we can begin to change the cycle. I found out some of the root causes of stigma; fear, lack of knowledge, discrimination, or lack of education. All of these things come from people not knowing and not wanting to know.

I deal with stigma by challenging it, just by letting people know the correct information. HIV is not something that we ask for, but it happens. You just advocate and stand up for yourself and not allow people’s words or slurs to bring you down or affect your self-esteem. I feel like you have to let them know that just because someone is living with HIV, this does not define the type of person they are. I didn’t give up, it just made me only go harder. At the time, I was still trying to get my bachelor’s degree but I did not allow the stigma to continue to affect me. I still graduated and I got a great job that I felt I was not qualified for. I was showing all of the people around me what I was doing by trying to affect change within society and our community.

I would say to others living with HIV, “Do not be afraid to be you. Do not be afraid to tell your testimony because this too is your testimony.” That person sitting in front of you or next to you, may be living with HIV and going through the exact same thing you’re going through and they are probably just looking for that one person to just stand up and say something. God placed it on my heart to do a lot about living with HIV. I want others to know that living with HIV, you can still have a life and continue to thrive.

– Diamond

HIV: Through a Different Lens

Emotional Health, Knowledge Buster, Lessons Learned, Stigma

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! 

Advocacy, Awareness Days, HIV Testing, Inspiring Stories, Stigma

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.

*****************

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

Emotional Health, Inspiring Stories, Lessons Learned, Stigma, Support, Taking a Stand, Uncategorized

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

Advocacy, Emotional Health, Inspiring Stories, Physical Health, Stigma, Taking a Stand

 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.