Category Archives: Taking a Stand

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

Finding the Courage to Survive

Action Tips, Advocacy, Emotional Health, Inspiring Stories, Lessons Learned, Taking a Stand, ,

When it comes to people who are living with HIV and AIDS, stigma in the church didn’t just start in 2020. It’s been around for quite some time.

Several years ago, I was invited to speak at a church. When I arrived, no one knew I was the speaker, so I just sat in the pews next to two ladies who were talking about people living with HIV, talking in such a negative manner that it got under my skin a little bit. Somehow, I managed to hold my composure.

When it was time for me to speak, I focused on those two ladies as I talked about how I was abducted, got shot, and left for dead on the side of the road. I looked directly at those two ladies when I said that’s where I contracted the virus and because of that, I am living with HIV. I could see their jaws drop, the shock when they realized they had been sitting right beside a person living with HIV. At the end of the event, the two ladies came up and apologized for how they had spoken about us. But, even though they apologized, I had already heard the way they really felt about people living with HIV/AIDS. It’s sad to say that in churches, where everybody is supposed to be about love and God, God may not discriminate, but men and women do.

Another time, I was a visitor at a church where everyone already knew I was living with HIV. At the end of the service, when everybody gathered together to hold hands for the last prayer, I reached out my hands but no one would take them. That was a very, very bad feeling. I was shunned by people who are supposed to be serving God, supposed to love their neighbor as themselves.

There are other times that I’ve overheard people in churches talking about people who are living with the virus. I’ve heard from some of my peers how they have been treated in churches, how they have been made to feel “some kind of way” after they have told their stories. To me, claiming you are God’s children should mean loving one another and caring about your sisters and brothers no matter what, whether it be HIV/AIDS or any other type of illness.

I feel that if I walk up to someone and say, “I’m living with cancer, “I get all the support in the world. If I walk up and say, “I’m a diabetic,” I get all the support in the world. If I walk up and say, “I’ve got HIV or AIDS,” then the stigma shows on their face. A word doesn’t have to be spoken. It’s just the instant reaction that you see from a person when they know or find out you’re living with HIV or AIDS. It changes 100% the way a person reacts with you. You would think, that in 2021, people would be educated when it comes to HIV and AIDS, but they’re not.

However, I would tell the person that is living with HIV that you have to find the courage within yourself. It’s a type of bondage that holds you when you have something bottled up inside that you need to set free. Your pastor is the one you should be able to confide in to help ease that bondage. The pastor will have whatever message God has given them to give to you. So, I would tell someone living with HIV to feel free to talk to their pastor and let them know because that’s where you get your support. You need that spiritual support. But the pastor can’t help you if you’re not sharing it.

When I got the courage to step up and say that I am the face of HIV, I felt that I had to tell people, to help build up the confidence of others who are living with it. To let others know that it’s ok to walk in those shoes – they are your shoes and you shouldn’t let anybody bring you down. The virus doesn’t dictate your life. For me, it was taking my power back. Once you take ownership of it and stop allowing it to control you, you can live. You can live a productive and happy life.

Many of us are still living in the closet. The stigma shouldn’t exist at all. It should be like, “I contracted the virus. It’s not your business how, but, yeah, I’m living with it because that’s what it is. It doesn’t make us the men or women that we are. It doesn’t proclaim our spirituality. We are still the loving beings God created. We should be able to walk around with our heads up high, with a smile on our face, and say, ‘This is me!”

-Marvene

Different Faces of a Caregiver

Advocacy, Support, Taking a Stand,

The definition, according to Merriam Webster, for a caregiver is, “a person who provides direct care (for children, elderly people, or the chronically ill).” Another dictionary defines it as, “a family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person.” I define it as someone who shows love, compassion, and empathy for anyone who is in need and it is within their power to help.There are three different faces of caregiving that I can identify with and would like to describe briefly.

Caregiver Wife. As a wife, I promised to love and support my husband through the good and the bad. I promised to be there in sickness and in health. When I found out that I was HIV positive, (before my husband received his diagnosis) I was devastated. However, I had to tell myself I was still alive and it was not a death sentence. I was fortunate, yet unfortunate enough, to have had previous family members who had the AIDS diagnosis. Therefore, I was able to see the good and bad of the virus before it affected me personally. After we found out my husband’s diagnosis, I went into caregiver mode.

I honestly believe that I was more concerned about him being healthy than myself, mainly because he had to start medication a lot sooner than I had to. I made sure we began to eat better, we both stopped drinking and he stopped smoking. We did everything we were told and instructed to do by our doctor, in order to make sure we did not end up dying prematurely, like my family members. After sixteen years, I still make sure we take our meds at the same time in order to continue that bond of care because we are in both our marriage and this fight together.

Caregiver Mother. As a mother who is HIV positive, I make sure I am constantly talking to and engaging with my own children, as well as their friends who have grown up with them, whom I consider bonus children. I am always talking to them about safer sexual interactions. I explain to them the dangers out in the world that they cannot see with their eyes. And I share with them, as often as possible, about the cost that comes with making bad decisions, if they choose to be reckless. When my boys were minors, I had them tested for every STD and virus known, and I encourage them to continue to do the same now that they are adults.

Caregiver Friend. Having someone you can call a friend for years is a great thing. But having to share with that friend a secret that you are ashamed of is very scary. You are afraid of how they will react because sometimes you can count on them more than you can count on your own family members and you don’t want to ruin the friendship. It is heartbreaking when you learn that those friends, who you have known and loved for years, have been hiding that same shameful secret that you have been hiding for years. And, when you are confronted with that truth, you are then saddened because you think of how you could have helped each other deal with it together but instead, because of the shame, you suffered in silence.

As a caregiver friend, I decided to create an atmosphere of support for my friends who are positive (living with HIV), as well as for their spouses, because we have to keep the family unit strong. When I began to attend a support group for positive women, I felt the disconnect from my husband. I decided to talk to the other women about how they were coping at home with their husbands. I wanted to know what type of support their husbands were getting, if any, aside from what they were providing. I started to see that again, we had the same problem. I then decided to organize a support group that would support the unity and bond of couples. We began meeting once a month which changed to twice a month. Then, that changed to celebrating birthdays, wedding anniversaries, and vacationing together. The only thing that has kept the group from growing and flourishing is COVID-19. Needless to say, I am planning an event as soon as I can, one that would be safe for all in attendance.

Being a caregiver comes naturally for some, others have to go to school in order to learn how to become a caregiver, and then they are paid to do so. I prefer to be the first type of caregiver. I truly believe this gift was instilled in me as a child from my grandmother, my mother, and my aunts. I love to help others striving to be successful. I love to help others make a difference in their own lives for the better. I think I will continue to enjoy my three different faces and aspects of caregiving, and would not change it for the world. In the beginning, the diagnosis I received was devastating. After many years, I see it has been a blessing. I have been living a positive life since being “positive.”

– Nickie

 

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!

8 minutes, 46 seconds: A love letter to our people

Action Tips, Awareness Days, Resources, Taking a Stand, , , , , ,

*** Content warnings: anti-Black racism, violence, pain, killing of Black people by the police, lack of accountability by the State, KKK *** 

June 2, 2020

PWN family,

We love you.

We have been rocked and our hearts are broken by the footage of George Floyd, murdered by Minneapolis police officer Derek Chauvin, who held Floyd under his knee for a full 8 minutes and 46 seconds. George Floyd cried out for his mama as he was dying.

Eight. Minutes. And. Forty. Six. Seconds.

We are breathless with grief, rage, pain, and despair.

But Derek Chauvin did not act alone. Officer Thomas Lane pulled… Click here to read more.

Voice of the Youth

Advocacy, Inspiring Stories, Taking a Stand

As the grandmother of the author below and a person living with HIV for 35 years, it is very important to recognize the voice of our youth on different issues that they are passionate about. They are our future leaders. Whether they are fighting for people living with HIV, stigma, discrimination, or better education, it is crucial that we hear what they have to say because it’s their future we are talking about. This is the way to get our youth involved: by letting them have their voices heard. So please continue to read what this brilliant young lady has to say about some of the issues she fights for.

 

Girls Stand Up

Young women everywhere are limited to certain things whether it be sports or something as simple as working. People may think, “So what? That’s how it’s always been.” My response to those people is that it doesn’t have to be like that anymore. We can stand up and make a change for what’s right.

For example, lets take a school sport: basketball. The boys’ team always has nicer uniforms and they always seem to be more praised. However, when you look at the girls’ team, hardly anyone attends the games and their uniforms are probably the same as the year before.

Well here’s what I think about the treatment we get compared to the boys. We can work and play as hard as they do, so what’s the big deal! Us women should be able to have the same opportunities as men—we are just as strong as they are, maybe even stronger. Just because we look weak and small doesn’t mean anything. Women everywhere should take a stand and show the men in this world what we are made of because we are more then just a pretty face. We should be the voice for other women, but most importantly be the voice for ourselves. Stand for what you believe in and do whatever it takes… just be you.

Now for us teenagers (young men and women), we all know what’s been happening in our schools. We’ve lost lives and now we are scared of what’s going to happen next. I know we all ask ourselves questions like, “Will I be next? And what are the adults doing about it?” Nothing is my answer. In my opinion, I think we need to get up on our feet, stand up, and speak up for what we believe in—don’t be scared.

I just read something that a girl posted. She’s trying to get into a better school, of course for better opportunities, but it’s hard because now the school is taking steps that are unnecessary and she said, “EVERYBODY should have the right to a good education and GOOD Resources!! But, right now the school system is only worried about MONEY, giving teachers guns, and the school population makeup. PRIORITIES HAVE GOT TO BE STRAIGHTEN OUT in the School system.”

Here’s what I think about that: she is right, but what about us? The school system is worried about giving the teachers more safety—what about OUR safety? What about OUR voices? I see teens fighting everywhere for a change and the administration is not budging. So what are we supposed to do? Well here’s something… don’t stop fighting for what you think is right. Be the change you want in the world, but don’t change because of the world. All it takes is a leap of faith and a little bit hope to keep fighting.

It’s Me Again

Action Tips, Advocacy, Emotional Health, Inspiring Stories, Taking a Stand, Uncategorized

I was diagnosed in October 2009. I was given my test results in Jan. 2010, my CD4 was 12 and my viral load was over 157,000. I was started on Isentress twice a day plus Truvada once a day. Three months later my viral load was undetectable (under 75) and my CD4 was 57. I have posted my continuing growing results on LTAI’s Blog before. Now on Jan. 9, 2017 my CD4 is 445, my CD8 is 473, and my helper cells are at 28% (CD4-CD8 Ratio). My health continues at a pretty good condition for an old gal of 65 years young. My health issues, which I had before HIV, have not
worsened, such as my IBS, acid reflux, etc. I have some heart issues (at 11-12 years old and had rheumatic fever) and suffered a mild silent heart attack 18 months to 2 years ago. I suffer some mild-hard chest pain and have been on continued long- acting nitro med (Isosorbide). I take blood pressure medicine and anxiety meds and both are said to be related to my HIV and other meds. However at 65, in today’s world, I think I would be on both even without HIV. It’s always important to see our doctor, take our meds and try to stay positive and active when we can.              

I attend my “Let’s Talk About It” support group monthly and attend other advocacy meetings whenever I can. I talk with my support and advocate friends often, and I send Pen Pal letters to 5 other women living with HIV who I help to advocate for. I
also have a special email pen pal in Croatia, who is also living with HIV, that I email and have for almost 7 years. I feel this support and advocacy helps not only me but the other women as well. I am a member of a newly formed Leadership group for women of our communities. We have to remember that if we don’t advocate and fight for ourselves, we may get lost in the shuffle. Today’s political world is crazy and we must not be forgotten or pushed aside. We can’t allow someone else to make choices for us, without us!

Remember the words of Elizabeth Taylor:
“I Will Not Be Silenced. I Will Not Give Up. I Will Not Be Ignored!”

 

Supportive When You’re Not Feeling It!

Advocacy, Emotional Health, Support, Taking a Stand

How can we be supportive/inspirational to other family and friends when we feel so…. lost ourselves?

Image from inextremiss

I have never been a what I call the “in your face type” with “things are wonderful and just smile”.  I am a realist and like to face obstacles head on with truth.  I can be supportive when someone is down and needs immediate support but I wonder later was that the right approach.

I am not a “Debbie Downer” but I believe in telling the truth when someone needs it. Some of the fake support others dish out doesn’t faze me nor does it help in the long run.

Facts, not fairy tales, I guess is what I believe is best. I know, I know “some” can’t handle the facts but I feel they need truth and facts head on to ditch the fairy tales.

How does everyone feel about that or how do you give support for the doom presently approaching us?