It sounds so cliché; but, growing up, I always knew that I was different. I liked learning new words, watching Jeopardy and the news with my grandma and I can’t ever forget the fact that I had an undying love for Arnold Schwarzenegger (seriously) until I was about 10.
But the one thing that probably differentiated me the most from all of my friends was the fact that I was born HIV-negative to HIV-positive parents. It seems unreal at times, even to me, but my mother had an emergency C-section because of a clogged IV. If you know anything about HIV and its transmission then you know that children who don’t pass through the birth canal have a significantly lower risk of contracting HIV from an infected mother. Well, that’s what happened to me. Some have told me it was a miracle because my mother did not know she was positive until I was a year old.
I wasn’t born infected but I am affected.
An HIV-negative child born to a parent or parents who are HIV-positive is affected; that’s me. My mom had my sisters and I tested when she found out that she was positive so I grew up knowing about the disease. We learned about it as she did, which was exciting for me but undoubtedly terrifying for a mom of three in the early 1990s.
When I was a sophomore in college, I took a class and we had to do extensive research on a health-related topic. We had to pitch three ideas to the class and I had two other topics that I was really excited about but I threw in the topic of HIV-affected children as a third option right before my pitch. It was something I grew up knowing about so it’s novelty was lost on me. But, I will never forget my classmate blurting out, “Yaaaaaasssss,” during my pitch and getting a very rare nod of approval from my professor. I was surprised at the interest and decided I’d focus my paper on the topic. Over the course of the semester, I learned so many things about my family and our dynamic. Essentially, I found myself in the research, which was life changing.
So, here goes…
HIV-affected children are uniquely challenged because of their parents’ status. A positive parental status can influence the behaviors exhibited by the affected child. Oftentimes, affected children become parentified—they act out parental duties in light of their parents’ inability. For example, an affected child may assume many common household chores or feel the duty to remind the positive parent about taking their medicine daily. This happens for a number of reasons such as wanting to feel and be seen as self-sufficient if the positive parent dies from the illness or because the parent is literally too sick to perform the action. Psychologists have deemed parentification a premature independence from the parents. I’ve never been one for household chores but I do see some of this within myself. My biological dad died from cancer when I was 12 and I’ve had a rocky relationship with my mom for many years since. Subconsciously or consciously, I’ve prepared myself for her death by detaching emotionally, which sucks but it is what it is at this point. I love my momma but this way is easier.
Additionally, some children may inherit a sense of activism in attempts to help prevent infection among their peers. Others may rebel by participating in risk behaviors such as unprotected sex, fighting and drug use. It was quite interesting to me that my research extensively discussed affected children who were on the opposite ends of the spectrum, as opposed to a happy medium like me and my sisters seemingly were. We weren’t self-proclaimed West Side peer educators and we weren’t promiscuous or drug users. None of our friends that were affected took on those roles either, as far as we knew. I was aware of the importance of safe sex but I wasn’t on a soapbox with my friends. But then again, I grew up in Atlanta and there were countless daily reminders about the importance of using contraceptives.
Aside from effects on behavior, living with a parent who suffers from a chronic illness can take an emotional toll kids. Affected kids experience multiple fears related to the possible death of a parent and being subjected to stigma. My mother’s mortality never became a reality until after my father’s death but I think his passing oddly prepared me for what to expect in the future. It was tough and is still hard to be without a parent but it’s a reality that I learned early on that every one of us will have to face in life.
Stigma played and still plays a huge role in my life. I constantly contemplate sharing my story because of the rampant lack of understanding of the disease. I fear what people will say, how they will treat me but more than anything, I fear how people will treat my mama when they meet her if I disclose her status. Luckily, I’ve never had an unfortunate encounter but my fear of people’s reaction will never go away.
Loyalty was also a reoccurring theme throughout the aspect of my research that explored the emotional wellbeing of HIV-affected children. Oftentimes, affected kids will not disclose their parents’ status in order to protect their secret at their parent’s request. It’s the classic adage, ‘what happens in our house, stays in our house’ but said with good reason. Parents don’t want others to discriminate against their kids and children may not entirely grasp the concept of what they are sharing with their peers. Unfortunately, it’s a slippery slope that perpetuates the stigma. Personally, I always felt guilty about sharing my mom’s status because until this project, I thought of it as her story alone to tell. I hadn’t realized how much of her story was my story too. I can’t imagine everything my mom has gone through as a patient but I do have to acknowledge how her status is a part of my life too. It was truly affirming when she gave me her blessing to complete the research project and disclose her status in my introduction paper.
When I was five or six years old, I wanted to be just like my mom as most kids do at that age. I wondered why I was negative but she was positive. I thought it was something wrong with me because it kept me from being just like my mommy. When I expressed that sentiment to my mother, she had to further explain the disease to me. I was shocked to find out during my research that this is very common for HIV-affected children, especially those who have a positive parent and a sibling. They can feel like outsiders in the family and crave a sense of belonging.
Additionally, an HIV-affected child is more likely to suffer from depression. Some children can develop feelings of invincibility due to factors such as the success of antiretroviral drugs, which have contributed to people living longer, healthier lives with HIV. Unfortunately and obviously, feeling invincible can heighten a child’s susceptibility to risk behaviors that could lead to contracting HIV. My mom has lived with HIV for over 25 years and has otherwise been in great health, thanks to her meds; but, I know I’m not invincible.
Lastly, children whose parents have HIV suffer socially. They may have limited social interactions with their peers as well as adults. This is typical of a child who has yet to accept the disease or has been instructed to not discuss the diagnosis. I grew up knowing my mom’s status, so even though I didn’t always fully understand the severity of it, I wasn’t completely shocked when I did grow to understand it all. I knew that many adults didn’t have a great understanding either so, at times, it did limit some of my social interactions. It was weird that I couldn’t be around my mama if I got a cold, which is the time most kids just want their mom. But, I had to go to my grandma’s because HIV attacks the immune system so I could’ve made her sick, which could have had much more grave consequences because she already has an impaired immune system. At times, it might have been isolating to not be able to talk about that with my friends but I think I managed pretty well. There were also so many sex ed classes that I had to sit through and listen to teachers give false or misleading information to my classmates but I couldn’t interrupt. Kids can be cruel and I never wanted anyone to look at me and ask in front of the whole class, “Well, how do you know?”
Once kids have accepted a parent’s diagnosis, they are able to better express themselves. As public knowledge of HIV has increased, it’s been easier for me to navigate some spaces but I still have some social fears. In fact, it took me twice the time to turn this story in to the editor as it should have because I was afraid of how it would be perceived by readers. And to date, I’ve only shared this part of my life story with a handful of friends; I wasn’t sure how they would react or treat me or my mom when they got to meet her. And as anyone can imagine, it’s a harder subject to approach in my dating life. I haven’t figured out how to explain this to a guy and have complete confidence that he’ll trust my word because my birth story is borderline unbelievable.
My research provided insight about many organizations aimed at bettering the lives and experiences of HIV-affected children. I participated with one as a kid called Hearts Everywhere Reaching Out (HERO) for Children, which was essentially a mentoring program. One-on-one mentoring helps children affected by HIV/AIDS to have ‘normal childhood experiences’ because HIV/AIDS disproportionately affects low-income African-American women in the US, who are oftentimes mothers. The diagnosis of HIV has many financial implications for patients and their families in terms of receiving appropriate medical care and medicine, so it compounds the plight of already impoverished children. Organizations like HERO provide another outlet for kids growing up in such unique circumstances by matching them with a mentor and regularly scheduled fun, kid-friendly activities. The mentor is usually impartial about what is going on at home and helpful to families by helping parents and children to identify a ‘safe’ person that children can confide in. These types of programs also implement the necessary sense of community support in dealing with HIV by enlisting the help of volunteers. HERO, in particular, allowed me to meet other kids in my area whose parents and/or siblings were positive. I experienced so much because of HERO and am definitely a champion of the organizations and others like it.
In closing, I’ll say that I’m hopeful that more people are realizing that HIV is not a death sentence like it was once perceived to be.
I will always believe that we can and will fight the HIV/AIDS epidemic. It just needs to be addressed in as many ways as it impacts. The affected kids are a good place to start.