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

A more convenient, monthly treatment for HIV cleared a key hurdle

Action Tips, Physical Health, Resources, , ,

Once-a-month injection of antiretrovirals works just as well as a daily pill regimen, trials show

In two clinical trials, a monthly injection of antiretroviral drugs was shown to be just as effective as a daily pill regimen at controlling HIV.
SERGII PETRUK/ISTOCK /GETTY IMAGES PLUS

By Jonathan Lambert
MARCH 4, 2020 AT 5:00 PM

People living with HIV are one step closer to having a once-a-month treatment alternative to downing two or more pills a day.

There is no cure for HIV, the virus that causes AIDS. But combination antiretroviral therapy, or ART, can effectively halt the replication of the virus, nearly eliminating it from the bloodstream and prolonging life expectancy (SN: 11/15/19). For the therapy to work, though, people must stick to a daily regimen of two or more pills, which experts say can be a challenge for many.

Now, the results of two phase III clinical trials suggest that a monthly shot of antiretroviral drugs works just as well as daily pills, researchers report March 4 in two studies in the New England Journal of Medicine. If approved by regulators, the therapy could be a more convenient treatment for the estimated 1.1 million people living with HIV in the United States.

“From a patient perspective, these results are very positive,” says Elizabeth Tolley, an epidemiologist at FHI 360, a public health nonprofit based… click here to read more.

You are Invited to be a part of Let’s Talk About It

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We meet monthly as peers to talk, share experiences, and just to educate each other. We strengthen our skills as we reach out to make the road easier for others. All of the LTAI women are dealing with the same issues and we talk about how to overcome barriers and obstacles in life.

We develop posters, magazines and participate in activities to share our stories, so that others can learn from our experiences. 

What can women gain from joining LTAI?
They get to know how other people relate to us, they can relate to each other and they can understand each other. 

What skills can you learn at LTAI?
We talk about our eating habits, how to best take our meds, how we can deal with life itself. We learn how to love one another and how to reach out to each other.

Can you give an example of how LTAI has been helpful for you?
I have learned how to not be so aggressive; I have a lot of anger. I have learned how to call on other people for ideas about how to handle a situation or certain resources that might help me.

I think more women need to get involved in LTAI because we get to express our feelings, we get to talk about anything and everything that we want to talk about… and it does not go any further than our group. We don’t have anyone pre-judging us because of our illness.
We can make a difference in the lives of other women!!

By  “L. H.”

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.

Togetherness – Stronger Together

Emotional Health, Support, , ,

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.

From HIV/ AIDS to COVID-19

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This pandemic brings me back 37 plus years to the dark days of HIV. As a woman living with HIV little was known back then, as little is known about the coronavirus, except we all know how we can stay safe from contracting this deadly virus! The scientists are making great strides on a vaccine.

We must all do our part by keeping safe and educating as many people as possible.
So, sisters, let’s do this ! We are all in this together and much better equipped with knowledge.
“Again, stay in and educate”

Read more…

IRS Launches New Way For People To Get Coronavirus Rebates

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Arthur Delaney
HuffPost April 10, 2020

The Internal Revenue Service unveiled a new website Friday where people who don’t normally file tax returns can enter bank account information so they can receive coronavirus payments.

The new site is on IRS.gov. There’s a big blue button that says “Non Filers: Enter Payment Info Here.”

Since Congress passed a law calling for cash payments to most households in the U.S., people with low incomes… Click here to keep reading.

Interim Guidance for COVID-19 and Persons with HIV

Knowledge Buster, Physical Health, Resources, Support, ,

Last Updated: March 20, 2020; Last Reviewed: March 20, 2020

This interim guidance reviews special considerations for persons with HIV and their health care providers in the United States regarding COVID-19. Information and data on COVID-19 are rapidly evolving. This guidance includes general information to consider. Clinicians should refer to updated sources for more specific recommendations regarding COVID-19.

Click here to continue reading.