HIVE BlogBlogs written by patients, consumers, and providers
Interested in sharing your story? No professional writing skills are necessary, and we can work with you if you want to be anonymous. Email Caroline@HIVEonline.org for more information.
My name is Sattie Nyachwaya. I am 29 years old and live in Dallas, TX. I am a Patient Care Coordinator and the HIVE blogs touched my heart so much that I wanted to share my story with you.
Kimberly Glanz’s detailed experience as an AIDS patient attempting to access disability benefits in Ohio while struggling with her health.
I have been in counseling for over a year now. At first, I was very skeptical and let’s face it, defensive. No one wants to think they can’t handle the stuff in their lives on their own. I have been taking care of myself in that fashion since I was 14. I moved out at 16, had my first child at 18, the next one at 22, and from then on have been a mother.
The more we talk about it, uplift each other, educate and support one another, the closer we get to ending the virus! No one should have to suffer in silence. If I could talk to anyone dealing with a similar situation, I would want them to know, “You are not alone, we can battle this together.”
I have learned so much about my body and what it means to me to be able to protect it. I have learned what it is to exercise my right, and that of other women, to be on PrEP.
I’m not stopping pre-exposure prophylaxis (PrEP) because my skin turned blue. That was an embarrassing mistake I made in the first few days of trying it. Don’t tell anyone, though, or they’ll find out that I’m the kind of guy who buys a black flannel shirt and wears it for a few days without washing it, not realizing it’s going to seep dye onto exposed areas, causing me to make panicky calls to bemused, sympathetic friends and globally noted HIV researchers alike.
How do I get through it all, a man that I thought the world of, a man that took me from the streets and helped me get on my feet with a job, a nice place to live, and practically gave me the world had also given me something that I must deal with for the rest of my life, and now I’m on my way to be Behind Prison Doors?
A couple of weeks later, he advised me that his HIV test came up inconclusive-which he advised me is mostly likely a positive result. The news was like a shot in the head because I was caught in between two worlds- do I stay with my current husband or do I move on to my new life?
For the past five years, I’ve been known as the ‘HIV positive heterosexual male go-to-guy’, a seemingly non-existent, rare voice within the HIV community. That all changed a couple of weeks ago when I finally came to terms and acceptance with a very personal topic I’ve grappled with for quite some time, the realization of my bisexual identity.
We were gathered together and again, your Umi knows I am living with HIV. The ceremony was simple. We prayed, spoke affirmations for your life, and then I raised you up, and spoke your name Amenhotep Kazembe Ture Abif.
Through sharing my story, I want to reduce the stigma in our lives and show others that there is truly life after HIV diagnosis. I also want to teach others how to advocate for themselves when it comes to protection, stigma, and healthcare.
I’m in a position in life right now where I’m living poor. At the moment, my lights are off, I have no way to get back and forth to the doctor, I haven’t been on meds since I gave birth to my daughter in march 2016, and it’s hard to find work where I live.
Then the truth set me free. Learning about Undetectable equals Un-transmittable ( U=U ), and PrEP gave me a new light in life. I set out to make sure I achieved and maintained undetectable levels to prevent the spread of HIV and inform my partners about PrEP. I have come to understand that my future child will not face the same stigma and side effects in their life. This hope has inspired me to think about what family I want to have.
My husband and I had an appointment due to a referral from my medical provider. We were eager to go because San Francisco General has one of the best programs in place for people struggling with HIV and AIDS. My husband is HIV positive and I am HIV negative. I recently started PrEP using Truvada because we are trying to have a baby.
I became pregnant with my third kid, and who knew, she would be my last. Six months into my pregnancy, I found out I have HIV.
I have to say that PrEP has become a part of my life and I feel really good about it, I also have been very happy on the Women’s PrEP Project and I will miss being a participant. As a woman, it’s never easy to talk about sexual health, let alone something like PrEP.
While to my knowledge, there are still little to no support groups for heterosexual people living with HIV, I have learned to focus on the Human of HIV. I aim to create the space to reflect just that.
I don’t feel that the guy I am currently sleeping with is a faithful man. He is very attractive and the problem is that he knows this, and uses it to his advantage. We use condoms, but I will be honest that a condom popped once and I was freaked out.
My name is Nestor Rogel, I am 27 years old and I was born HIV positive. I live in South Central Los Angeles, and have been advocating for people living with HIV for many years. Being a single heterosexual cis gender man in Los Angeles is difficult. Dating and disclosure have taken on different meanings in my life.
If I want to be a strong, independent woman then I have to be smart about my health and my body as it affects my life, my partners and even my children. Ultimately, for me, PrEP is about taking back my power. To take back my power and take ownership over my body. With this awareness I want to make positive choices for myself and walk through whatever fear I have.
My Name is Michael Zalnasky. My friends call me Zee. My grandsons call me PaPa. My Daughter, well she calls me Dad. And I am Heterosexual HIV POZ.
That damn bicycle has given me a life back when I thought I had none. It’s rejuvenated my creative abilities to record and acknowledge such an incredible, health-rebuilding journey. Spinning my wheels to the tune of 8,880 miles since August, 2015, and I was diagnosed August, 2014.
This decision to be married and have kids has absolutely nothing to do with me being undetectable with a high CD4 cell count. I still wanted children even when I was first diagnosed with HIV.
I had eventually hit my bottom, where I had to get into treatment. At that time I had a beautiful healthy son. I completed a drug program, got my own place and was in a new relationship. I decided to get tested because my significant other and I wanted a baby. I found out that I was HIV-positive.
It was great to feel like I didn’t have to limit myself in certain ways when escorting, and it made me feel truly empowered to be taking the reins of my own destiny. I’ve been PrEPpy for over a year now, and, though stigma is still there, I still take it upon myself to talk about the benefits of taking PrEP while in the Sex Work field, and take the stigma out of both.
National Youth HIV/AIDS Awareness Day promises LGBTQ youth that our history matters, and that we deserve the right to education, preventative resources, treatment, and care. #NYHAAD
I asked him immediately if he was HIV negative, because otherwise I could always go to a hospital to get PEP [Post-Exposure Prophylaxis] before 72 hours passed. He reassured me that he tested negative five days ago, and I should not worry at all, because he always used condoms.
That’s the prevailing air about this topic. It’s shameful, it’s dirty, it’s met with incredulously judgemental gawks. The stigma surrounding HIV is radically ignorant, leaving the vast majority of the population in fear of so much as the topic, much more so anyone diagnosed.
Every child learns and grows at a different pace, I know back in the day kids grew up a lot faster and weren’t coddled as the ones today. I don’t think my daughter quite understands the gravity of the virus and what it comes with, the doctors, the stigma, the friends and family casting you out, mostly because of ignorance, so, when I think she can wrap her head around it is when I’ll discuss it with her.
NWGHAAD is an annual, nationwide observance that sheds light on the impact of HIV among women and girls. This is the 12th year the OWH, at the U.S. Department of Health and Human Services, is leading the observance.
I want to do the right thing to. I’m only a kid and I can’t vote yet. But I can do other things. I have a mind and a voice. I can use it to help other people, just like I was helped. I want to be treated with respect and to have rights, and I want other people to have them too. We all deserve them.
Every day is a survival struggle. Moving on, perhaps I am a bit forgetful, but my plate is full with trying to make ends meet.
One of the few things I’ve learned in life is that if you stay positive and constantly ask the universe, eventually you do get what you want, which in this case, is exactly what happened.
After sharing my story at the conference, Lilieth and I became close friends. Prior to Lilieth and I being involved in a monogamous relationship, I wanted to know how difficult will it be to get on PrEP. I decided, what better way to educate the public about PrEP than to be on it myself?
I love who I am. I feel as though I have begun to feel out many deep canals of my intersectionality recently, and it has honestly excited me for the future of my love life and journey with self-care.
My son was a different story. I just felt like it was too soon for me to tell him my status. I was hoping I could teach him about it and then let him know sometime after that.
One day, a dude I liked did not have an ID and wanted to have sex. So I got the condom, went on the side of the building, gave dude the condom thinking he would respect my health and me. I turned my back because I seen the condom go on. But dude took the condom off.
After asking my provider why I have never been asked about my sexual history/practices, her response was mind blowing: “Well, we talked about birth control and the possibility of you having a baby three years ago…”
My name is Christopher Holmes, and I’m a 34 year old Black gay man living with HIV. I’m from Atlanta, Georgia, and now reside in Bronx, NY. I have six brothers and one sister and they all have kids.
As a former sex worker, I know how it feels to be judged and be subjected to people’s opinions and unwanted advice.
The same year as my diagnosis was the same year I was accepted into law school. I am now a licensed attorney and as of writing this piece, have been with my partner (who is HIV negative) for the past 6 years. We are also the proud foster parents of our 18-month old daughter.
At the PrEP for Women dinner we launched the curated web page with women-centric PrEP resources, a crowd-sourced effort from allies across the U.S. Palm cards promoted the web page (we have extra; reach out if you want some to share locally!) and provided opportunities to bring women into the mainstream PrEP Summit conversations. We also screened the newly released #20DaystoStart PrEP for Women video from Project Inform. The video was celebrated with thunderous applause.
At my age today (62), I am not looking to become a statistic. So as I go forward in life, I am looking forward to PrEP keeping me HIV-negative. PrEP will become a part of my sexual encounter kit. I know that it will prevent me from contracting the virus. Usually, with age comes wisdom and I know, that at this time, prevention is better than a cure.
My journey will begin starting next year, when I start the adoption process and actively trying to find a surrogate that is HIV positive. I don’t know where this journey will take me, and honestly I am still fearful, but I believe in facing fears head on and not cowering away from them.
After sitting down with my daughter, and educating her about HIV/AIDS (using information from the CDC), she instantly felt relieved, and immediately gave Henry a hug and kiss on the cheek. Things have gotten much better between me, Henry, and the kids now.
Now comes the snag, we are having difficulty due to the fact that Donna needs fertility medications to help us have a baby. Our insurance does not cover it; the most we could afford was a visit to a fertility doctor, to buy treatment for about 9 months, plus two follow up visits. So far we’ve had no success.
I used to think that life without heroin was no life at all. All my time was spent making sure I had money and dope. I wouldn’t go to bed without a wakeup [drugs for the morning]. Now, I can go to the symphony, or a revival of the Rocky Horror Picture Show. I can go spend time at the Academy of Science in Golden Gate Park. Those things are really interesting to me, and now I can do them, because I’m sober and living a better life.
I was in love, so what did I do? I educated myself on everything HIV related, and I talked to anyone and everyone who had something encouraging to say.
I was immediately attracted to the idea of taking PrEP as I am multi-partnered as well as a sex worker. I want to keep myself as healthy as possible, as well as protect all the people I interact with sexually.
Needless to say, I’ve had a few ups and down over the course of the past 16 years, but my daughter is the reason why I get out of bed every day. I consistently think about what I can do to improve her life and be there whenever she needs me.
To me, living with HIV/AIDS is NOT a death sentence nor a curse. There is a stigma that our society has normalized that if one is HIV POSITIVE it because that individual hasn’t been behaving well or had many boyfriends or girlfriends, however that is a myth.
I have been taking PrEP for roughly 9 months and I have no complaints about the medication. I am a 40-year-old woman who is HIV negative, and my partner is living with HIV.
My name is Charlly Moore and I’m a BBW adult film star. I now take PrEP every day for my sexual health. I’m safer with my sex practices now than I was before taking PrEP.
One of the main reasons I’m using PrEP now is about prevention: I believe in preventive care. If I can do something to better protect myself, then I should take that opportunity. I love life, and I want to live life to the fullest.
I found PrEP to be beneficial for me because I had two sex partners and wanted to protect us all and improve my chances of remaining HIV negative. I am aware that PrEP doesn’t prevent other STIs or pregnancy, but I think using it is a good choice for me to prevent HIV.
The day I decided to start taking PrEP was the best day of my life. It actually made sex more enjoyable for me. I am a swinger and do have a higher risk of contracting any STIs.
I want a second chance with a new child of my own who I can raise and love throughout his whole life, living in the same city, and with lots of stability. I feel as though I’m in the right place, financially, mentally, and me and my girlfriend both love each other dearly.
My own fear and ignorance led me to believe that I wouldn’t be able to be able to have children and that I was unworthy of love. By educating myself about HIV, disclosing my status to trusted family members and friends and engaging with my community I learned the value of my own life.
Both moms of my kids identify as lesbians. I’m coparenting with my son’s mom, and I will be coparenting with my new baby’s mom, too.
Also, even though everyone stresses the use of condoms, using them is not as easy as opening the wrapper. I would love to know that I had more protection against something like HIV that is incurable. #WheresMyPrEP?
I have been HIV positive since 2007. Two months after I found out I was positive, I had my baby. He is now nine years old and is HIV free.
Drip. Drip. I could hear the sound of the saline dripping from the IV as I stood at the door. His back was turned towards me and the room was dark. The shades were drawn and I asked myself, “Is he sleeping?”
From Lev (Elena’s husband)-
I want to add a small message of my own personal gratitude to the people of HIVE and Ward 86.
3 years ago, while living in Moscow, Russia I was diagnosed with HIV. Today I live in San Francisco, my viral load is undetectable, my CD4 count is at a normal level, and 2 months ago I gave vaginal birth to my healthy, HIV-negative son.
Harm reduction describes a philosophy and approach that encompasses a wide range of policies that promote public health and well-being, while decreasing the negative consequences that can occur as a result of natural human behaviors—primarily those relating to sexual and substance use behaviors.
Twelve locally and nationally esteemed speakers shared their expertise in their respective fields, presenting on topics including: trauma-informed care for women; disclosure, criminalization and stigma for women living with HIV; reducing anxiety and pain during gynecological exams; and healing rituals and practices for service providers.
Part 2 of Freya Luna’s PrEP journey. Learn how she finally got on it, what it’s been like, and what her advice is for women in the same situation.
That moment, that whole night really, wouldn’t have happened if I wasn’t on PrEP, and it’s largely why I continue to be on it. #APIHAAD
I met Nathan 16 years ago when I was in a rehab, newly sober from a heroin addiction. He was very open about being HIV positive and I was already somewhat educated about it…
As a representative of my school’s LGBT community, mainly through the platform of the GSA club, I have struggled with how to bring up the topic of HIV/AIDS with my peers.
It’s almost National Youth HIV Awareness Day. Last year I wrote something about it that was positive. This year I’m having a hard time being positive. Maybe it’s because I’m a teenage girl and because of puberty I’m really sensitive about everything. But I don’t think that’s all. I think as I get older certain things about me having HIV get harder.
PleasePrEPMe.org, an initiative of HIVE, is a location-based, searchable California PrEP Provider Directory formally launched in November 2015 followed by the release of the Spanish version in January 2016. #PleasePrEPMe
HIVE (the San Francisco-based hub of positive sexual and reproductive health) and the AIDS Foundation Chicago’s (AFC) Midwest HIV Pregnancy Prevention and Planning Initiative (MHPPPI) co-created a video series about HIV-affected individuals and couples and reproductive health intentions – real life vignettes of #HIVLoveWins stories.
Rebecca Schwartz, LCSW, HIVE’s “special sauce” is interviewed by her former client, Caroline Watson, to honor Becca on World Social Work Day 2016.
Dr. Judy Levison’s response to the Texas Department of State Health Services decision to cut funding to Planned Parenthood.
When I found out she was pregnant, it was like a shot of dopamine surged through my blood and left me in a state of euphoria. I felt like I had finally caught a break in life, God had finally answered one of my prayers, to be a father…
Finding that special someone can be a complicated enough process without adding HIV into the picture. When I was diagnosed it seemed like an unfathomable possibility to find someone who would accept my status…
When I first found out that the man I had fallen in love with is living with the virus, I felt like I had been punched. I wondered if we would be able to have a normal relationship and lead a normal life: be able to get married, have children, and grow old together.
When I heard the words “You are HIV Positive,” in June of 2012, time itself seemed to have stopped. It was as if I was seeing my whole life flash before my eyes and I was a simple bystander on the sidelines left with no control of the situation but to watch.
My partner sits on the table in our gynecologist’s office undressed for her annual exam. The hospital gown is flapping open around her back when our gynecologist says that given my partner’s age, health history, and low risk factors, she can skip the pap smear…
I’ve been married for 9 years and my husband has always been positive. Before we got married we found out he was positive and thought I was also because we were sexually involved…
My husband found out he was positive about a month before I flew to Texas to go see him after all those years. We started to do our research at that time. In our research, we ended up finding PrEP…
I decided that if media, doctors, public health officials were determined to withhold this life-saving information from others, then I was going to do something, anything, to change it.
I didn’t want my work week to go like this, but by Monday afternoon it was clear that much of it would be spent talking about Charlie Sheen’s disclosure that he is HIV positive.
I was interested in breastfeeding not only because of disclosure reasons but also because of the value of breast milk & bonding, but I was concerned about the HIV risk
Look, there are lots of reasons to hate Charlie Sheen, but HIV isn’t one of them.
On a rainy Monday afternoon, I met with a dynamic and steadfast woman who works for P&G292, a clinic run by the GGD Amsterdam (Public Health Department).
The two women who came to Queer Nation in the early 1990s, like me, were young queers. Unlike me, their families had sent them to therapists who believed they could cure these women of their queerness.
It seems like “everybody and their mama” is doing or has done some type of “top ten” list about this thing or that thing… These are just mine. 🙂 So here goes…10 things you need to know about families affected by HIV.
We need PrEP as sex workers in our country because most of our members are dying just because they have no knowledge about PrEP. Considering the type of work we do, we are vulnerable and many times we find ourselves in a place where we cannot help ourselves. So I want to reach out to any organization that works with sex workers in the area of PrEP to come to our rescue.
When considering whether or not you wish to become a parent, selecting the right family building mechanism is often a major challenge for parents-to-be. This is especially true when they may not fit the traditional cookie-cutter image of parents in the eyes of those from previous generations.
My husband, Deon, and I are a serodifferent couple, which means that one of us is living with HIV and the other isn’t… After my husband disclosed his status to me, I did some research to find out what my risk would be if we had condomless sex.
The doctor hadn’t expected trans men to enroll, but when I showed up in her office arguing that I, too, was a high-risk gay guy who needed PrEP, she conceded that I was right.
The FDA needs to hear what the people want and need when it comes to safer sex options!
He says that if it weren’t for Facebook, or for him becoming HIV positive, we never would have met, so maybe HIV was a blessing in his life.
Weezy tells her story of addiction, domestic violence, recovery, HIV, love, and pregnancy.
While I was in Vancouver, for the International AIDS Conference 2015, I attended a series of tours of safer injection facilities…
My husband’s (then-boyfriend’s) HIV diagnosis came completely by surprise… It took several months of trying, but we finally were able to conceive a baby on our own – no special interventions needed.
Sketch Smith is an artist, amateur photographer, & writer. She hopes to add her artwork to many different causes for HIV, abused children, & foster youth.
Sketch Smith is an artist, amateur photographer, & writer. She hopes to add her artwork to many different causes for HIV, abused children, & foster youth.
“Oh, that’s it, I’m not going to have kids, and no normal person is going to want to be with me, because, who is going to want to be with somebody that has a contractible sexually transmitted disease.”
My mind raced, as I tried to digest the news of my husband being diagnosed with HIV.
Check out the photos and accompanying thoughts of the PhotoVoice participants.
I decided to create a unique arts and advocacy project to give patients a safe space to share their experiences and together make their voices heard to fight stigma…
I found myself in a new paradigm of being able to practice the expansion, love, organized chaos, sharing and responsibility of my childhood as we created a new way of living.
I was in jail, and had decided to get tested. I knew that my girlfriend at that time was living with HIV and we hadn’t been taking precautions.
We quickly rekindled our romance and naturally the subject of his HIV status came up…
When the shock finally wore off many months later, I realized HIV was only a small part of me and I was not going to allow this virus to define me.
I care about her a lot, but if she can’t accept HIV then our friendship is not going to last.
Alejandra Cruz is an amazing fashion designer, hairdresser, & makeup artist who lives in San Francisco with her dog, Chichi. She is originally from Puerto Rico. She is a transgender woman living with HIV.
But this has got me thinking….do I want to start PrEP indefinitely regardless of if we’re trying to get pregnant?