Tag Archives: health advocacy

Being a Supportive Caregiver

Action Tips, Emotional Health, Support, , ,

As a caregiver to my mother who is living with HIV, I have found that being an emotional support is a crucial aspect of helping maintain her health. Sometimes, it may not seem like much to be that shoulder to lean on but remember, stress can be a huge factor in the state of one’s health. Showing support to the person you are caring for can help relieve those feelings of being overwhelmed and stressed. In the long run, this can help improve their health.

For me, I have found three things to be very important when I think about the type of support I provide my mom.

• First, being non-judgmental is key. People living with HIV are living every day with stigma and judgment from our society. Be a safe haven for the person you are caring for. Provide a judgment-free zone, where they can freely open up to you.

• Second, assist them in reducing stress through interaction with others, through their faith, or through exercise. Staying upbeat is important. Stress is the number one factor that causes health to go down because that’s when a person wants to give up.

• Third, you have to take a moment to reflect on yourself and your role as a caregiver. It’s very important to self-care. The role of a caregiver is to be a support to someone you love, but if you are giving all of yourself, this can cause you to burnout.

You don’t have to be someone’s only source of support. Part of supporting your friend or family member is providing them with resources they can use to seek support from others. This is important for the person you care for, as they can gain even more strength from others. This is also important for you as a caregiver. Helping the person you love build a network of support will help you to not get overwhelmed as well.

– Nanny

Supporting Loved Ones with HIV

Emotional Health, Support, , ,

When I was young, I can remember my aunt going through a sickness none of us kids understood. No one told us not to do this or that concerning her, so we treated her with much love and care. We did not understand at that time that her health condition was, to others, something that sometimes breaks families apart and makes your friends treat you like a walking contagion. We did not treat my aunt that way and I would like to feel that I was allowed to form a better relationship with her through that time.

When speaking to my mother about this, she mentioned that it was very important for us, as a family, to be there for her. It was a big transition not just for her but for the entire family, and the way my aunt viewed life would change. We didn’t want her to feel like we had abandoned her or were walking on eggshells around her. So, instead of pushing her away with the stigma of what other people in the ’90’s thought about having HIV, we chose to draw her closer.

As a kid, that was my view of a person living with HIV, and how I, and my family, supported our loved one through that situation. We laughed with her more, made sure she rarely had to cry alone, and showed our love and support in more ways than one. I believe we celebrate her life every time we educate another through her story.

I feel that a person living with HIV only wants their family and friends to have the opportunity to understand their health condition and help them be strong along the way. No one wants to go through anything in life alone. No matter the diagnosis, your loved ones deserve to have someone to lean on.

So, in response to the question of how you can support someone that has just been told they have an HIV diagnosis, the first thing I would suggest you ask is, “Are you ok?” Not just physically, but ask about their mental health and take notice of their emotional state, as well. The second thing, depending on the nature of the relationship, would be to get the information/facts in order to support them properly. As a child, I didn’t know it, but my family took the time and educated themselves, making sure we were all safe. Just love them! I believe that’s a major aspect of understanding what’s going on with them. Make sure they know you’re there and they can come to you if need be.

To sum this up, I want to say, “BE PRESENT. EDUCATE YOURSELVES and SHOW LOVE! Your family/friends are still the same people. HIV DOES NOT DEFINE THEM.”

Guest Contributor – Love

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

We Need Each Other

Advocacy, Inspiring Stories, Support, , , , , ,

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

Advocacy, Emotional Health, Inspiring Stories, Lessons Learned, Support, , ,

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