Category Archives: Family Stories
The current edition of POZ magazine has an article titled “All Grown Up with HIV”. It features 4 individuals who were infected with HIV as youth. Two were infected perinatally and two were infected behaviorally as teenagers. I’m featuring the 2 individuals who were infected perinatally as that is the topic of this blog.
Thirty years into the epidemic, a new crop of kids faces adulthood—with HIV. From babies born with the virus to teens who acquired it behaviorally, members of this new generation struggle to navigate survival while making their way through the world. The stories of these four brave young people are examples for how to succeed in spite of HIV. They also serve as cautionary tales, reminding us of the price we pay for not teaching our children well. Let lessons be learned.
Lafayette Sanders, 24, West Philadelphia,
Having found power in disclosure and self-advocacy, musician Lafayette has found a new life. Now that he has broken down his own stereotypes about HIV, Lafayette is trying to help other people do the same.
I was in the doctor’s office. I was 13; it was a few months after my mother passed away. My grandmother took me for a checkup, and I was then told about me being HIV positive. My grandmother knew what I didn’t: My mom died of HIV, HIV that she passed along to me. They told me, and I took the meds but didn’t learn anything about HIV. At that age, I had no idea about the stigma or life spans. Having to take medications was like taking vitamins: You don’t know what it’s for, you just do it ’cause it’s good for you.
And then high school hit. I started to hang around kids my age, and everybody was talking about sex, and HIV came up in the picture. I wanted to tell them I was positive, but I didn’t know that much about it to tell and to be able to defend myself. I didn’t want to be looked at as different. So I didn’t disclose. There were so many feelings, and I was so angry for so long. It took me a long time to get over the anger at my mom—that she didn’t tell me herself, when we were so close and shared everything, and then to find out this big thing and to deal with it on my own. I was angry at her, God, myself, everybody. And then there was my grandmother. My grandmother was the primary guardian to my sister and me after my mother passed. My sister, who is not HIV positive, was too young to remember my mother’s death. My grandmother, who is a sweet and caring woman but also very traditional, put me in a box of fear. She made me believe that disclosing my status would change how people treated me, how they looked at me. It wasn’t true, to me—I knew someday people would understand and accept me for me.
When I was maybe 17 or 18, I woke up every day thinking about HIV and [I wanted to make it go away, to pretend it wasn’t there] so I stopped taking medication. I would hide it, pretend. I was young and irresponsible. And I was having sex.
The turning point came with my last two girlfriends. I disclosed to [the first one] right off the bat. Still we were reckless and irresponsible, and she got pregnant. She had a miscarriage, and to this day she’s negative. Second relationship, almost the same thing. She had an abortion. I was sitting in an abortion clinic, and I thought, “How the hell did I end up here? I’m reckless, and the people I’m with are reckless.” That was my wake-up call, the moment of “You have to get your shit together.”
I hooked up with iChoose2live [a youth organization designed to encourage self-esteem and awareness about HIV and other issues]. I thank God for everyone He has placed in and out of my life. He uses who He chooses when He chooses. If it weren’t for me meeting [hip-hop artist] Lee Mekhai at a show in Philly, I wouldn’t have found out about iChoose2live and the founder Shenille Melton. That opened a lot of doors for me as far as reaching the youth.
Since I had already taken a course for certification in HIV Peer Education through Philadelphia FIGHT’s program, Project TEACH, I thought about disclosing my status. For 10 years, my grandmother was the voice discouraging me from disclosing. I was secluded. She drilled into me that disclosing was not safe, that “the neighbors are gonna look at you this way, no one is gonna look at you the same way or accept you.” But as I began to educate myself about the virus, how it works and what it does, I began to lose the fear of disclosing. Then after I linked up with iChoose2live, I came out in a big way through interviews and the work [I did with that group].
My grandmother kicked me out when I told her I would be doing an open interview about me being positive with The Philadelphia Inquirer, which [was published] on September 13, 2010. [At that time,] I had no job, no money, I was struggling. But a lot of positive things came from my disclosure. People emailed me to thank me for being honest about my HIV status. I was intrigued and blessed that my story could help others. I started speaking to groups at the children’s hospital. Kids looked up to me.
I’ve learned that kids in public schools aren’t being taught what they really need to know. HIV is that disease that’s swept under the rug; no one talks about it. And youth are spreading [the virus] because they’re uneducated, misinformed and not being reached out to enough. I honestly think there should be mandatory classes in all middle schools through college for educating about HIV/AIDS [and other sexually transmitted infections].
Positive people my age need to be out there. You can’t have a 48-year-old man talking to kids about this. No one listens. You need someone like me, someone who is living with [HIV]—then it becomes more real. It’s a great feeling to be able to do that. And that’s just me! One person. Imagine if everyone was doing it, if everyone got together. We may not be able to stop this pandemic, but we can inform, educate and empower, and we can slow down the rates of HIV transmission.
I would like to write a book about my life living with HIV and just my life in general. I know my story and experiences within these past 24 years can help educate, empower and change other people’s lives—people of all ages. My story will heal lives all over and most importantly let everyone know the power of God. He’s the only reason why I’m still alive and healthy.
I’m looking forward to the future, staying healthy and changing people’s lives.
Paige Rawl, 17, Indianapolis, Perinatally Infected
She is a high school student, an athlete, a teen. Having encountered and overcome enormous stigma, Paige has flourished—making a place for herself in a world that hasn’t figured out how to make a place for youth living life with HIV.
My name is Paige, and I’ve been positive for 17 years. My mom unknowingly passed it on to me, and she found out her status right before I turned 3. She contracted the disease from my father—we’re not sure how or when he contracted HIV. That’s just the way it goes.
My mom told me I was positive when I was in fifth grade. But I didn’t get it. I took the pills because that’s what you do when you’re young and your mom gives you pills. And then middle school happened.
In sixth grade I confided in my best friend; I told her I’d been HIV positive since birth. Within two weeks, she had told her sister and other people, and they told others, and eventually the whole school knew. Everyone. People threatened to beat me up; they left a note on my locker saying “No AIDS at [school name].” They gave me a nickname: “PAIDS.” They told each other not to drink after me, as if HIV was contagious [that way]. I went from [being] popular to having no friends.
In eighth grade, I made the soccer team. I was going to be part of a team. Then someone told my coach I had AIDS. At our first away game, my coach approached me on the bench, in front of other players, and asked, “By the way, I heard that you have AIDS. Is that true?” I said no, because I don’t have AIDS, I am HIV positive and there is a difference.
I was so upset. This was a coach. Someone who should know. I told mom, who confronted my coach at school. She admitted to asking me and went on to say, “The soccer team could use my HIV status to an advantage, and the other team will be afraid, and I can score goals.” I withdrew from the school and finished out my year with homeschooling.
My mother has been so supportive. And my family. I didn’t have to disclose to them; my mom told them before she even told me. But you need support of different kinds. Since the bullying, the coach, the discrimination, I’ve started seeing a counselor and started taking an antidepressant. It’s OK to look for help, and it’s OK to get help.
I realized that I can help other people too. I wanted to take a bad situation and turn it into something good by helping others know about HIV and the precautions they should take. So I became a peer sex educator and a certified HIV/AIDS educator through the American Red Cross.
I also started looking for support groups and even tried to start one. I searched the Internet, I asked questions, and I was referred to Camp Kindle [a free summer camp for kids living with or affected by the virus]. Meeting other kids [like me] has given me people to talk to, people who can relate to what I’m going through.
These days, I am open about my status to everyone. I take the time to speak to my peers, raise awareness and share my story. Funny, after disclosing to my former best friend in sixth grade and it spreading through the school, it just became easier to tell people who didn’t already know. For the most part, there’s a positive response. The fear that I should not have disclosed my status so soon just doesn’t exist anymore.
I know firsthand that there are still big misconceptions out there about how you can and cannot contract HIV. [We need] more education among youth in the U.S., and there should be more support groups. Youth need to see themselves reflected in what’s taught, in the information they are given.
The hardest part about living with HIV is the stigma that goes along with it. But I have hope. Two years ago, I was the freshman class president, on the JV cheerleading squad and on the soccer team. Last year, I was part of the student government and on the varsity squad. I volunteer, I share my story, I travel. I have hope.
Here are 2 stories written by 2 different families on opposing sides of the disclosure topic.
Written by a family who chooses to disclose their child’s HIV status:
When my husband and I were considering adopting our daughter, who has HIV, one of the first things that we discussed was the issue of disclosure. Whom would we tell? How would we go about telling people? I had volunteered for five summers at a camp for children with/from families dealing with HIV. I had also worked for two years as a case manager at an AIDS service organization. I had witnessed many, many individuals and families who kept the status of their HIV+ family member secret, and I had watched many individuals and families struggle greatly with the stress of doing so. I met children who lived in fear of accidentally “outing” an HIV+ sibling or parent. I met HIV+ children who lived in terror of their friends finding out their secret and abandoning them. I met parents who felt that they had no one to trust and who carried the burden of their and/or their child’s status alone. My husband and I considered these scenarios carefully, both to determine what we wanted for our child but also what we wanted for ourselves. We felt that living with HIV was not just our child’s issue; it would become a family issue, and it would affect the emotional climate of our family.
What we determined was that we did not want our child to live in fear. We did not want her to fear that her friends and the people in her life only loved a part of her and that they would disappear if they knew all of her. We did not want her to live with a huge secret. We did not want her to wonder what people would think if they knew she had HIV. We wanted our child to be secure in the knowledge that the people in her life loved and accepted her, all of her, exactly as she is that no one in her life is afraid of her. In addition, we didn’t want our younger children to feel that our family lived with a secret that might destroy us if it were found out. We did not want our kids to feel responsible for being the gatekeepers of such a secret. We did not want our children, any of them, to feel isolated and alone with the stress of living with HIV. And finally, neither my husband nor I felt comfortable with the idea of perpetuating the stigma of HIV by living as though it was something that needed to be a secret. We are familiar with the argument that HIV isn’t a secret but that it is personal information that shouldn’t be shared. We asked ourselves whether we would disclose that one of our children had cystic fibrosis or diabetes or any other health issue that would affect our children’s lives and emotions. Our answer was yes, we would, because no one blames children for having these illnesses, and everyone expects that the child and family living with these illnesses needs support. We feel that HIV is the same and that it’s the social stigma of HIV that makes it seem different. My husband and I did not want to have to come up with ways of stretching the truth when necessary. We did not want to have to lie if our child were to become ill and need to be hospitalized. We did not want those in our lives to feel betrayed if/when they found out that we had kept this information from them. We had the feeling that, if we told people that our child had HIV, it might be a big deal, but if we didn’t tell people and then they found out, it would most likely be a HUGE deal. We felt that the backlash from keeping such a secret would most likely be far greater than the reaction to an initial disclosure.
Most of our close friends and family members knew that we were sponsoring an HIV+ child. Disclosing to them consisted mainly of telling them that we would be adopting this child and offering the opportunity to discuss their concerns with us. I wrote up an information sheet about HIV, how it is transmitted (and how it is not transmitted), how it is treated, and the likely prognosis for our daughter. I offered this to our friends and family when we told them of our plans to adopt our daughter. No one took the information sheet, and with very, very few exceptions, everyone was extremely supportive. We presented the information in a straightforward manner and with the expectation that our friends and loved ones were already educated about HIV or would be willing to become educated. We did have some family members who were quite opposed to the idea and concerned that we were putting them, their children, ourselves, and our other children at risk. One family member was concerned about how it would affect her children if our child died. We handled people’s concerns by continuing to provide factual information in a calm manner while communicating clearly that our decision was our decision and that we were committed to adopting our daughter with or without their blessing. Although some family members remained opposed to the adoption to the very end, all of them have ended up welcoming our daughter into the family and none of the threats of ceasing contact with our family have materialized.
We had planned to homeschool our daughter, so we felt that the situation would be fairly well controlled. All the families in our homeschool group were aware of our daughter’s status before she came, and all were supportive. In the end, the best choice for our daughter was to go to school. We have been open with both of the schools she has attended, and the the administration and the teachers have been very supportive. We have presented the information in the context of the whole picture of our daughter and how her life experiences have affected her emotional and educational life. Our daughter has chosen not to disclose to her school friends. She has told me that she doesn’t trust her school friends well enough to disclose to them, and we recently had a very anxiety-inducing situation when our daughter was invited to spend the night with a school friend and was very anxious about her friend discovering her medication and asking about it. Although we talked about various ways of handling the situation and the medication was never discovered or commented on, we felt that this situation gave us a glimpse into what life would be like if we had chosen to keep our daughter’s status a secret, and we remain satisfied with our choice to disclose. Our daughter’s opinion is that although she chooses not to disclose to school friends, she is glad that “everyone else” knows that she has HIV and that they “aren’t afraid” of her.
My husband and I both know that disclosure is an issue that will affect different families in different ways, and we respect that different families will handle it differently. As a guest blogger for Positively Orphaned, I welcome the opportunity to share my family’s journey in the hope that it would be of benefit to other families who are considering this issue.
Written by a family who chooses NOT to disclose their child’s HIV status:
I am a very open person, and have been known to share probably more than is necessary throughout my life. In late 2006 my husband and I made a decision that would ultimately challenge and limit my open nature. Our decision was to adopt another child. This time we were adopting an HIV positive child and there was another layer of research and decision making to be done that reached far beyond the experience we had with our first adoption. One of the most important decisions to make was whether or not to disclose our child’s HIV status.
We started the process being fairly open about the fact that we were adopting an HIV positive child. A few friends, some colleagues at work and our immediate family were informed. Our news was always received with support and interest. We live in a very diverse and socially progressive part of the country and most of the people we interact with are well educated and knowledgeable about HIV/AIDS. We felt comfortable talking about it, and did not meet any ignorance within our closest circles.
Things started to change after we brought our daughter home. We learned that she was completely unaware of her own HIV status and really had no understanding of this disease. We began having regrets about our initial rush to disclose. We realized that we, too hastily, had made an important life decision about a small child that we did not even know. We did not feel confident that our disclosing had even had any impact on reducing the stigma. We simply could not find a compelling reason to disclose anymore.
I began doing some research to gather information about how children, whose status had been exposed by their parents while they were young, were faring as teenagers and adults. There was not much data to gather, and the little I did find was not very encouraging. Most of the adoptive families I have connected with during our process have chosen to disclose, but their children are young, just as mine are. I felt that I did not have insights from young adults on how their parents decision to disclose had affected their self image. We decided that we were not willing to take a risk with our daughter’s self image and her trust in us as her parents.
We spent the next many months getting to know her and falling in love with her. She began immersing herself in her new life and in school. In the summer we spent time with our extended family and unfortunately, it turned out that some of the family members who initially were understanding about her status were now treating her differently than they treated our other kids. It was subtle, but our daughter noticed it. I noticed it. It broke my heart. My relatives had a new baby and would not allow our daughter to touch her. The parents guarded over their baby and refused to interact with my daughter. It was shocking to me and once again I regretted ever having disclosed her status. We had spent countless hours educating this family about HIV prior to them meeting her. They even expressed quite a bit of knowledge about the disease themselves. Even with knowledge of the facts about HIV and stigma, the fear still abounds. Seeing the hurt and confused look on her little face that day made me vow to myself that I never again would use my daughter to educate others about HIV. This is not my job. If anyone asks me if my daughter is HIV positive, I answer honestly by saying that she is healthy- because she is.
My daughter is only 7 years old and going through an immense transition right now. Together with our Pediatric Infectious Disease doctor we are still in the early stages of explaining HIV to her. This is our priority right now. Informing those around us of her status is not important. They are not at risk, and I take comfort in knowing that the law is on our side. When she is a teenager and an adult I want her to look back on this time knowing that we focused on building her self confidence and empowering her to make strong decisions about her own life. That we protected her privacy, just as we protected her sibling’s and our own privacy. That we would not let her be known by her status and that the decision to disclose would be fully hers to make. I am not HIV positive and I do not presume to know what it is like to live with this disease. I can only try to guide her to a place where she can find the strength and the courage to be comfortable in her own body- with this disease. When she is mature enough to understand the medical and social aspects of this illness and is able to make an informed opinion about disclosure, it will be with the support of her parents.
We also do not regard our daughters HIV status as a secret, just as we do not regard our other child’s ADD status a secret. This is just private information. Should someone find out about anything private in our family we will certainly use that opportunity to educate. If one of our children tells someone about a sibling’s status, we will use that opportunity to teach our children about respecting other people’s privacy. We will not make a big deal out of it.
I have found that joining the effort to fight HIV stigma without disclosing my child’s status is not difficult. I have been involved in various efforts to remove the HIV immigration ban, I have met with policy makers as well as with HIV positive people in our community. I am in the process of starting a non-profit and with this will continue to do whatever I can to raise HIV awareness and fight discrimination. Perhaps one day my daughter will join me, but I will let it be entirely up to her.
Adeye, otherwise known as No Greater Joy Mom is hosting a fabulous giveaway which includes fantastic prizes such as a new Kindle, $100 Amazon gift card, $50 and $100 Gift Certificates, artwork, jewelry, Vera Bradley bag, quilts, girls clothing and accessories, and tons of other stuff – more than 100 prizes total. She is raising funds for an adoption grant for Vanya with HIV in Ukr*ine, to help him find an adoptive family. The giveaway ends April 13th, so CHECK IT OUT, spread the word and enter to help Vanya and win some fantastic prizes! It’s very easy to enter – even a $1 donation or blogging about the giveaway will get you entered into the giveaway. At the time of this writing, Adeye has raised $7,000 with a goal of $20K.