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.
Many times I’m one of the first to speak up. I don’t feel I do that because I know more than others. I do it because so many hesitate to speak up. So maybe I speak up 1. To fill the gap. 2. To get the ball rolling. 3. To prime the pump.
I mean if you pour a little water in the top of the pump, then try pumping you get plenty of water. Right? My analogy of the pump comes from my childhood when my grandparents only had a well and an outhouse.
We had to pull up buckets of water and then they moved up to a house which actually had a pump in the kitchen. (Still without indoor plumbing for a bath tub or a toilet.) When the pump wouldn’t bring up any water we had to prime the pump with a cup of water. You had to make sure to have that cup of water or we had to go outside and pull up a bucket of water. It didn’t seem too long without pumping before it would need primed again.
I thought about many times at a meeting of several to many people I am the first one to raise my hand and speak up. It’s not because “I know more” I feel it’s because “I’m priming the pump”. I speak up and something I said makes another person think of something to add or in another direction. My words can get the ball rolling, the ice breaker, or maybe overcome someone else’s fear of speaking first. I have many ideas, and not always a favorite, or maybe something someone else is thinking or their experience. I’m not afraid of disagreeing with the main speaker but I try to be polite whether I agree or disagree.
You don’t have to be a good speaker to speak up. It’s your thoughts, your feelings, or your own experiences.
We all come from different walks of life. We all have our own stories and experiences. Don’t think “no one” wants to hear your ideas or thoughts on any subject. Great minds think alike? Great minds also disagree but great things come from people with many ideas and experiences when they merge them together.
So be that “Primer” and Prime The Pump. What’s the worst thing that could happen? You wouldn’t get water. I don’t think that would ever happen as so many people have plenty to say, they just couldn’t find the words until “You” spoke up!
One of my favorite things that I say is “Speak Up And Speak Out”. And that can apply to advocacy or everyday life.
Don’t be afraid of being different, of being laughed at, and never be afraid of being wrong.
There is no wrong words but there’re many things never being said. So “Prime That Pump”. You never know what comes up could be Liquid Gold!
The Judge Not! Campaign was a big success! Even though we have a long ways to go, it was a start to reach a part of our community that we have not dealt with because the stigma in the church community is so heart breaking that it is not an easy task. But someone has to do it, so why not us?
We say we are advocates and we want to see a change. What better way to make a difference in the the lives of people living with this health issue than to continue to stand up and advocate and be a voice for the voiceless. One way to end stigma is through community events. There are different approaches to being an advocate and it doesn’t matter how you choose to advocate as long as you have a purpose, the outcome will be great if you believe what you’re doing will cause change.
On March 9th, 2019 there was a change that took place in the community. Let’s Talk About It had a community event to celebrate Women & Girls HIV Awareness Day. The event was “educational, powerful, and fun, it brought unity to the community. It opened the door to other community establishment in our area” (M.E). We had the support of local politicians, pastors, artists, media, and community agencies. There was HIV testing, vaccines, and health screenings taking place and people were still getting tested when the event was over. To help end the stigma of HIV we gave some people hope and that’s what it’s all about.
Hope, tells people its not the end, there is life after HIV. It gives people an expectation, you’re expecting something to take place, a change to take place, a change in the stigma of HIV. It allows people to be free and to show you don’t need to be afraid to be who you are, to love yourself, and to accept yourself no matter your health issue. This is why you have to believe in the work you’re doing. The change may not happen in a day, but it will eventually happen.
“Not everything that is faced can be changed, but nothing can be changed until it is faced” –James Baldwin.
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 email@example.com.
“It was another way I could be an advocate and reach out to a different part of my community where stigma has been the greatest.”
I first got involved with the LTAI testimonial media campaign, project (Judge Not!) two months ago. I thought the project sounded like a great idea because it was another way I could be an advocate and reach out to a different part of my community where stigma has been the greatest. Our hope was that the fotonovelas would help to reduce the stigma experienced by people living with HIV by educating others who have not been informed about the virus. My overall goal was to let people know that no one is exempt, that we are all affected by HIV.
We reached out to the church community to let them know that we felt that this is an issue that has been ignored and it seems as if the church community is afraid to talk about it. But why not talk about it because, it’s here and it does exist? The Word of God, John 10:10, says that the enemy comes to steal, kill and destroy and how does this take place—by lack of knowledge. It can be hurtful when someone enters a sanctuary and is judged because of their health condition. People come to church to be healed by the Word of God and to receive an inward peace. It should be a place for a life-changing experience, but sometimes I feel as if the community doesn’t have any compassion because of the stigma
“We hope to break the barrier of stigma and open up a new door in the church community to allow people to know they are not alone and its okay to be free.”
People have to understand that HIV is a health condition, just as if it were cancer or any other health issue. There are people sitting in the church dying inwardly because they are afraid to come out as living with HIV. They have a condition and want someone to talk to but they have no one to talk to. So by being a part of this campaign, we hope to break the barrier of stigma and open up a new door in the church community to allow people to know they are not alone and its okay to be free, it should be okay to talk about it in the sanctuary. I want them to know that a lot of times people want to be accepted, but it starts with accepting yourself first.
What I enjoyed the most about making the fotonovelas was the joining of many people from the community, it wasn’t just one voice, it was many voices, thanks to the participation of religious leaders and women from the Women’s Leadership Initiative joining the women of Let’s Talk About It. We were able to develop the stories by looking at the issues from different perspectives. It wasn’t just any one person’s issue, it was an issue of justice.
Have you done anything in your community to reduce stigma? Let us know in the comments below.
I felt like writing and updating my CD4 numbers. Then I thought “How many people know their numbers can and will fluctuate while on HIV meds?”
Maybe our life is like a merry-go-round too. Around and around our health issues seems to go. We go up, we go down like the horses on the children’s ride. One thing gets better and something new starts or an old issue flares up.
I didn’t know it until it happened to me. And it can be a shock, thinking you’re sliding backwards. It’s like being on a roller coaster UP, DOWN. UP, DOWN! And it can or will happen often to many of us with HIV.
Isn’t it fun living with HIV? It may not be fun and games but it’s better than the alternative which is death. We’re so lucky to live in the new times of surviving HIV. The new medicines, new ideas, and new treatments. Thankfully most of our doctors are educated or can be educated about the new medicines and treatments.
I got side tracked now back to my new CD4 numbers. Mine have dropped a little bit again. I was at 513 in Jan. 2018. My CD4 now is 433 for June 2018. My viral load is still undetectable, less than 10, and my percentage at 28%. My doctor once told me the percentage is more important than the actual CD4 or T cell count.
I’ll add this explanation I found online to help some to understand this percentage importance. I googled “percentage CD4 numbers” and found answers to often asked questions there. It’s a little confusing but please ask your doctor to explain it well enough. That is the most reliable information
The CD4% is a more stable marker than the absolute CD4 count. The CD4 percentage refers to the percentage of total lymphocytes that are CD4 cells. If your test reports CD4% = 34%, that means that 34% of your lymphocytes are CD4 cells. The average normal CD4% for HIV-negative adults is about 40%.
What is the normal range for CD4count?
As HIV infection progresses, the number of these cells declines. When the CD4 count drops below 200, a person is diagnosed with AIDS. A normal range for CD4 cells is about 500-1,500.
As I posted above it’s a roller coaster. It’s a merry-go-round. I guess we could say it’s an amusement park or a circus. The main thing is, it’s our life and most of the time it’s not fun. We need our “sisters”, our friends, our support circle around us and close. We’re a “family” and we’re in this together. We can laugh together and we can cry together. The important thing is “we have one another.” We Are Not Alone. Reach out and you’ll find one of us
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.
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? 🙂
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