Category Archives: Emotional Health

The Secrets We Keep: Living with HIV

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

Being a Supportive Caregiver

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

Surviving with Hope

When I first found out about my situation, I was pregnant and I was on my way to work. I can tell you what I had on and everything. My doctor called and asked if I could come into the Health Department. I was already five months pregnant and I was like, “Do you really need me to come in, you can’t tell me over the phone?”

When I arrived, he brought me into his office and he had a nurse sitting next to me. She was holding my hand and she kept on saying, “I’m so sorry.” I asked what was going on. And then the doctor said, “You’ve tested positive for HIV.” At first, it was like he was talking in slow motion. I thought, “I am about to die.” That’s the first thing that came to my mind.

I stopped taking my HIV meds after I gave birth to my daughter and my son. In my eyes, I was 200 pounds. In reality, I was about 90-something pounds. So basically, I was so skinny that my doctor was getting nervous. He said I only had five years to live. “The top is five years, but the way you are going,” he said, “it is going to be less than that.” However, I didn’t think there was anything wrong with me. So, I guess, God had to give me a little reality check that something was wrong.

My first streak was shingles and I had to go through the pain. The second streak was a little sore on my forehead. I had to deal with that and sores in other places, but I still was in denial. My doctor finally said, “Enough is enough,” because I went from a size 14 to a size 4. That’s how bad I was. My doctor said, “I’m telling you this because I care and you are a sweet person.” He said if I do what I’m supposed to do, I would live as long as I want. He told me to look at my kids, that they need their Mama. He said, “Don’t you think they want you to see them graduate and go to prom? That’s what you’re supposed to be living for.”

When he said that, I started to break down crying because I couldn’t believe it was me. I’m not here to hurt anybody, why would somebody want to hurt me. My doctor said. “That’s why God doesn’t give you more than what you can bear. Now, what I want you to do is eat as much fast food as you can, take your meds, and drink Ensure.” And, by the grace of God, I’m here today.

I first recognized that my testimony was part of my purpose when my pastor, came to my house and asked if I would join him to visit a woman in the hospital. I will never forget it.

When we entered the hospital room, I was introduced to a woman with the same first name as me. She was also in the same state of denial that I had been in. She was in a wheelchair but also really skinny, so when I walked in, she looked at me and I looked at her and she was like, “You are a very pretty woman.” I said, “Well thank you. I am very glad to hear that.” Then she asked me why I was there. I said, “My pastor asked me to come to see you as we have a similar situation.” And she said she didn’t think I had the same thing as her. I asked her to tell me what she had that she didn’t think I had. She said she just found out that she was HIV positive. I asked her why she thought I didn’t have it. She was like, “No, not you, you’re too pretty for this.” So, I shared my testimony. I told her that it was not going to stop her from finding the person that she loves. I said, “As a matter of fact, I see this as not being a curse, but as a strength. God allowed you to go through this because he knew that you could handle it.” And then she looked at me and I said that “He’s going to send the right person to your life who’s going to understand your situation.” She started crying, I prayed and I sang with her.

Months later she messaged me on Facebook. She said, “Guess what? Thank you so much. I am married!” She looked stronger and pretty. The doctors had given her three weeks to live, just like they had given me five years. That’s how bad she was. But, I believe when I walked through the doors it gave her hope.

Finding the Courage to Survive

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

Supporting Loved Ones with HIV

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

Still Standing

Several years ago, I was at a point in my life where I was suicidal. A close friend of mine was telling me about a pastor, “This pastor is trustworthy and very supportive. You can go and talk to him about anything. He will give you the best advice and you don’t have to worry about anything.”

I was at my breaking point and I needed help. I don’t even remember calling the pastor. I just reached out. I just remember being in tears. I don’t know if I was drunk, I don’t know what was going on. I just knew I was thinking about suicide.

Wanting to trust someone and seeking help and guidance in a spiritual way, I went to see the pastor that my friend suggested. With the pastor, I shared everything from before my diagnosis of HIV, after my diagnosis, my good, my bad, my wrongdoing. I told this pastor everything. It was so comforting. The response that I received, the reassurance at that time, was so real and so loving. I just felt so comfortable that there was a home there for me and my children.

I trusted this person so much and this was my last resort for trust. I had been betrayed by family, friends, the streets, and by the school system. Sometimes, I feel like I even betrayed myself. I wanted to be accepted, to know that I’m not any different than anyone else. To not be put in a box or feel like I’m in a cage because of what I’m telling. All I was looking for was acceptance.

A few months later, after disclosing my HIV diagnosis to my pastor, we were at a church event, but there was also a group of people there that I didn’t know and didn’t trust.

During the sermon, the pastor began to speak about my health situation. At first, my name was not brought up, but my health situation was. My pastor didn’t refer to my correct diagnosis (HIV), but he referred to it as “sick.” That hurt me, knowing that it was me he was talking about.

As he continued with the sermon, he disclosed my name. I felt so stripped, bare naked with no cover, and everyone was waiting on my response. I couldn’t run anywhere. I was right there in the middle of everybody and they all knew who I was. I felt betrayed and couldn’t believe he just straight up did this to me after I had told him what happened to me, and to turn around and call me “sick” and expose my name was a straight betrayal.

I can’t really explain my feelings at that time; it felt like someone just pulled my heart out. It just had me feeling like the world was not real. Like God was not real. It made me feel like, “I turned to you and this is what you do to me.” At the time, I didn’t realize that men can use God as a cover-up to do their dirty work. I did not have any thoughts of suicide, but at that time, I felt like God did betray me like there is no God. I kept asking God, “How could you let someone do this to me after I let them know what’s going on?” I looked to this man of God, I came to him to get to God, but I know now that it was ungodly, it was not right.

Even though this happened to me, I think others need to disclose their status to their congregation because not everyone is educated about HIV. People will take stuff, will run with it, even if they have a mature mind. The church is like a hospital, people come in, they have different issues: depression, anxiety, cancer, life issues. The church is the mental hospital, the healing hospital, the counselor, the teacher. I feel like people should be able to walk into the church, feel relief in the church, but you can’t because every church is not the same. Every leader is not the same spiritual advisor.

I think pastors should put themselves in that person’s shoes and say, “What if this was me?” Look at it as if it was one of your loved ones – do not judge them. Let them know it’s okay. Always have open arms, listen, pay attention, be real. The worst thing you can do is betray them. When you betray them, you’re betraying God, because God put them there so you can reassure them. This is God’s way of using you to bring an individual to him. We need more people to be real.

Be careful who you trust. I’m still learning. But, also have faith and trust in God. I know now that you don’t have to turn to people to reassure yourself that God is real. Would you rather stand by God and be judged by the crowd or stand by the crowd and be judged by God? I say that because the crowd can leave your side at any time, but God will always be there.

– Unhurt

 

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

Togetherness – Stronger Together

Yesterday I was invited to join a Zoom call with some women from a support group we all belong to. At first, I hesitated joining in.

Since the call was several hours away, I went on with my scheduled activity. We had workers rebuilding our front deck floor.  It took 10 hours with breaks, etc. By the time the workmen left, I was exhausted. I had worn down, as if I had used the hammers and nail guns myself.

While I freshened up my hair and added a little make-up, I debated about not joining the call. I felt almost like crying, I was that tired or exhausted. My husband kept coming in to interrupt me to help handle the paying and saving goodbye to the young men. I told him I was preparing for something for myself. Finally, the guys left and hubby wanted to rehash the work, etc.

By this time it was past the 6:45 scheduled connect time. Again, I debated skipping the call. No! I am doing this. aSo I quickly rushed around gathering up what I might need, my phone, my laptop, my drink, a snack, a few things I wanted to show them. Whew! I settled on my bed, rearranged my pillows, my throw, and checked to make sure nothing was showing that I didn’t want seen. Lol. Gave my laptop a fast glance to see if I could quickly figure out how to use it for the call? No, I don’t think so, too complicated for my brain now. I clicked on that link and ….it tells me I have to download an app. Wth? This seems ill-fated from the get go.

Finally loaded, click link, enter number, password, okay…..what? It says the person is not ready yet. Lol. Lol. Lol. OMG.

Finally a face pops up…..wearing this strange looking GET UP!  Oh yeah, I know that face. Lol. Now I get it… nothing unusual here. Lol. Looking fabulous even in this funny hat, mask, and necklace.  Another face pops up. OMG, I know her too but what the heck is she wearing? Then another, and another. Wow! These gals really planned and here I thought I was prepared. Lol.

I think eventually we had 9 – 10 – 11 or so women log in to the Zoom meeting. I am not the best technical person so I only saw one face at a time, except for Mama and daughter, and they kept changing. Lol. One or two were only instant glances, then gone. Technical difficulties for a few and we lost them.

After all the greetings, hellos, and laughs at the get ups we started a real gabfest. Due to some previously unknown planning, one fearless leader asked what we’ve been doing while in “lockdown”? We discussed our lives and a few difficulties we’ve had. Thankfully no one has been down with coronavirus in our support group. There have been some family, more distant, suffer and survive the virus.

We were asked what we miss most during the stay at home requirements? Some really good answers. Most say family, going out in public, our friends, our group, and shopping (A woman’s 7th or 8th sense you know? Lol). Our little male mascot made an appearance and added to our fun. A very, very smart mascot he is too. A couple gals showed a few pets and we all enjoyed them.

We discussed our fears and worries over our health, our families, and COVID-19. It seemed like our worries and fears sort of matched one another’s. Some of us are all alone at home, and some have family and loved ones that need care as well.  We discussed worries about doctor visits or not going to a doctor. We talked about our stress and what is causing it even more. We talked about many things, but the connection was what was most important! At least it was to me. (I did speak to a couple other women that were on the call and they agreed how great it was. And the connection was needed.)

I’m not sure how much time was planned for the Zoom call but as I was one of the last to sign off,  I’d say 3 hours at least. Lol. (I am a bit of a talker.) And only ended due to a family call and needing to end our talk.

I really, really, really enjoyed this connection with “My Friend’s,” my support group, my sisters, and our little mascot “E”. The bond is strong with these women and I don’t know if anyone else can understand it, unless you have a similar bond with a special group of women or men.

For anyone sitting at home and feeling alone, feeling disconnected or afraid of COVID-19 or some other fear– “Reach Out.” Sound the alarm. If you only talk to “One” person you may feel less alone. You may feel happier. You may feel more loved or just love inside. It’s not an instant fix but it could lift your spirits a little and that sounds a whole lot better to me. I know I felt happy after the call and the “Connection” with my sisters. We are not connected by blood but by our hearts and spirits. ❤️

P.S. When someone I know, even if only on Facebook, loses a loved one, I will send them a link to a song. My go to is Michael Jackson’s “You Are Not Alone”.  It always makes me cry. I cry for every loss, every hurt, every sadness I or anyone else feels. I’m a softy on the inside of this old hard lizard skin.

Wrap Your Arms Around Me! 

I’m getting excited about an upcoming conference with several of my friends and I will attend in a few weeks. It’s filled with so many old friends and we make new ones.

It feels so freeing to gather with so many people “just like us”.  A few hundred people doesn’t make me uncomfortable but envelopes me in warmth. Their arms are kind and loving.

The need to hide our status or health issues is forgotten and we can and do speak freely. So many people and so many friendly faces. It’s like a family reunion where we all may look different but we share a lot. We can catch up with old friends and share with new ones. And try to make all the “newbies” comfortable and welcome.

We cry over the friends we may have lost over the past year. We cry over the strangers we never had the chance to meet and now they are gone. Gone but not forgotten. We try to make sure each person is mentioned and we celebrate their life. I hope once I leave this world my name is mentioned at this conference too.

We attend workshops to learn new ways to make our voices heard. We attend to learn about medicines, side effects, government programs. We learn new skills and we get inspired by so many others doing just what we do.

We have a few guest speakers who tell us their stories and make us feel included. We even have some comedy and laughs.

We have lots of laughs and smiles are big. And that is what feeling free does for us all.

The meals are great. They offer us tasty food and the hotel staff treat us with the most respect. The free time we can spend on the beach, use the pools or go shopping. Of course, some just take a nap. Lol.

After dinner and the host’s presentation, we choose what to do. The nights are filled with activities as well as Karaoke, dancing, or just music. Sometimes the hot tub or a cool drink is all we need. Then off to our nice beds and sleep for tomorrow is another busy day.

I come back home usually exhausted but excited to share or try out new things I learned at the conference. Best of all is the friendships and bonds that were started or renewed.

HIV: Through a Different Lens

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

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

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

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