Category Archives: Advocacy

Different Faces of a Caregiver

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

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!

 

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

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

We Need Each Other

In many of our churches, we sing a popular song entitled, “I Need You to Survive,” by Hezekiah Walker. The lyrics of the song convey a powerful message, “I need you; you need me. We’re all a part of God’s body.” It goes on to say, “You are important to me, I need you to survive.” When I hear the church singing this song, I often wonder if we realize what we are singing, because when it comes to the HIV/AIDS community many of its members feel as though the church does not have a need for them. In fact, the church has made them feel excluded. They feel like the church will survive just fine without them.

HIV/AIDS is running rampant in every community in the United States and around the world. Even though there is no cure as of yet, people living with HIV/AIDS are still able to enjoy a long, healthy life if the right treatment, love, and support are in place – the kind of love and support many of them never receive.

I also find it interesting that the church places a lot of emphasis on loving thy neighbor, yet there are so many people in the HIV/AIDS community who feel they have never received the precious love of a neighbor and especially from the church. In fact, women living with HIV/AIDS tell me it is the people in the church who have hurt them the most, from members in the pews to preachers in the pulpit.

As a pastor, I have always viewed the church as a trusted source in the community for both social support and where healthy coping strategies are developed; a place of refuge, the one place where those who are living with HIV/AIDS should be empowered and supported. But the truth is, in many churches, HIV/AIDS stigma, discrimination, and mistrust are thriving. The church, the very place that should be a safe haven, has become the source of hurt, rejection, and pain for people living with HIV/AIDS.

I must be honest and say, I am not sure whether the hurt, rejection, and pain are due to a lack of knowledge, plain arrogance, or a lack of compassion. Whatever the reason, as a church we must first and foremost, understand that, for a lot of people living or suffering from HIV/AIDS is through no fault of their own. If you stop and think about it, we all suffer from some type of malady, hurt or challenge because the world can be an unfair, unjust place. Secondly, we are to be the hands and feet of Jesus in our communities, meeting the spiritual, social, and economic needs of all people, and not just those we feel comfortable with. And thirdly, the church has a responsibility to serve and support our sisters and brothers living with HIV/AIDS through education and awareness in order to prevent this disease from ravaging our communities and to reduce the stigma and discrimination displayed towards people affected by, and living with, HIV/AIDS.

As a church, it is certainly not our place to judge. We have the opportunity to take care of some people who are hurting and need us, and we need them to survive as part of the body of believers in Christ Jesus. We need to build each other up and recognize that we need each other to be whole.

Guest Contributor
The Rev. Mary L. Mitchell,
Senior Pastor
Bartley Temple United Methodist Church

My Journey: It Could Happen to Anyone

As a woman living with HIV, I have been through a lot in my life. As someone who was born with the virus, I grew up taking medicine, going to numerous doctor appointments, and getting stuck with needle after needle. This was normal to me, as I never had a life before my HIV diagnosis. Being born with HIV puts you in a different category from those that acquire it later in life.

I was born in the ’80s, at the beginning of the AIDS epidemic, and the virus was still so new that people didn’t really know what it was or how it was transmitted. At that time, they had no medicine to treat it, and I was not expected to live past the age of four years old. My birth mother had her own problems and so almost immediately after I was born, I was taken from her and placed in foster care. Thankfully, I was placed with a foster family that would become my forever home. Growing up, I never knew why I had to go to so many doctor appointments or why I had to take pills every day. Most of the time, I would find ways to not take my medication because it made me feel sick and I felt better without it.

My parents would set out my pills for me each day and I would flush them, throw them away, and do everything with them but take them. I ended up in the hospital for a month with stomach colitis because of the inconsistency with which I took my medication. Seeing me struggling to take the medication and my poor numbers as a result, my parents finally sat me down at the age of 12 and had the family therapist tell me my HIV-positive status. At that time, I did not really have any idea of what HIV was, so I immediately told my two best school friends. I was lucky that they never told anyone, or if they did, I never heard about it or was ever treated any differently. As I grew up and went on to high school, I started becoming aware of how negatively those living with HIV were perceived. I made the decision not to tell another living soul, and I did not. I still was not taking my medication consistently, so I had no trouble hiding that part of it. If I spent the night at a friend’s house, I would not even worry about not taking my medication. My friends would sometimes ask me why I would not donate blood when they were doing it, and I would just tell them it was because I was afraid of needles. I kept quiet about my status for the rest of middle school and all through high school.

To this day, those classmates and friends that I grew up with, still don’t know that I’m a woman living with HIV. This unique perspective is one of the many factors that have shaped me into the person and woman that I am today. I have always been motivated but became even more so after the birth of my son, who is negative. Being a single mother, while also living with HIV, has brought out a strength in me that I did not know existed. I grew up in a stable, loving environment and this is the kind of life I am motivated to give my son.

I recently graduated with my master’s degree in Business, with a focus on Healthcare Management. It was an online-only, 2-year graduate program, and in those two years, there were many times when I wanted to give up and throw in the towel. I stayed up late to work on assignments. I was exhausted, nervous and stressed, etc. But I put my nose to the grindstone and kept pushing forward because I knew, in the end, it would be worth it. I would be one step closer to achieving the goals and dreams I had planned out for my son and myself. During the two years I was in school, I still had to keep up with taking my daily medications, going to my doctor’s appointments, getting labs drawn, and working a full-time job. There were some nights I would be so busy with my son and doing schoolwork, that I would forget to take my medicine. On other nights, I simply wanted a break from swallowing pills, so I would make the conscious decision not to take them at all. During all this time, my viral load never increased beyond undetectable, but my CD4 count did drop some, which I attribute to the constant stress and exhaustion of it all.

Being a mother, single or otherwise, is definitely stressful in its own right. But, when you add school, living with HIV, making sure to eat healthily and exercise regularly, working, and so on, to it, everything becomes one big melting pot that often threatens to boil over. I have always found ways to push through the hard times because I have had no other choice. I have a little person depending solely on me to make the right decisions. I am thankful and appreciative to have the support and generosity of great friends and family, which is not something that a lot of people have. Their love, empowerment, and inspiration, it helps motivate me more to live a life that is successful, rewarding, and courageous.

– Crittlecakes

Moving Ahead

Today is National Black HIV/AIDS Awareness Day, and as a community, I think it is very important that we understand the reason why we have to fight so hard to end the epidemic again HIV/AIDS.

As people of color, we are already fighting against the injustice of racial barriers, which increases the stigma of those living with HIV.

We wanted to share this straight-to-the-point blog by Venita Ray, a woman who has touched many lives. Click the image below to visit her blog. We hope that you will find the strength to speak out and advocate for yourself, your sisterhood and your community.  We want you to know that you are not alone and if you feel that you are in need of support, we are here for you. You can reach us at letstalk@rwhp.org.

Voice of the Youth

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.

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.

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

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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