Positive Life NSW recently sat down with PSB Speaker and Board Member Melissa and her two children, Amari and Johannes*. They shared their thoughts and reflections since learning from their mum that she’s living with HIV.
I decided to talk with both my kids in May last year (2024), said Mel. It was a Thursday night. Just the three of us went out for a casual dinner. No family. I started the conversation with telling both of them, “I have something to tell you.” Then I said, I have HIV.”
Even though Mel was diagnosed with HIV three years after the birth of her second child, son Johannes, she delayed sharing the news with both of them for another nine years. Supported by her parents and closest relatives, she wanted to wait until they were able to understand and discuss the news.
She says, I don’t think they were that surprised. I’m pretty sure my daughter Amari already knew. They asked the usual questions like, where, how and what kind of questions. I expected these.
16-year-old Amari interjects, “I knew already. I could tell,” she said. “I knew a few things about HIV, and I could tell my mom was taking medication daily. I knew this was something that people living with HIV do to, you know, keep themselves safe from the virus.”
Besides learning a little bit about HIV at school, Amari had also noticed the phrase “people living with HIV” on a banner at a Positive Life event the family had attended. Mel says, “even though I thought she might have known something, she never really asked me directly, so I didn’t push myself to talk about it with her straight away.”
Mel asks her daughter, “how often are you learning about HIV at school? Do they teach you that people can live a long life with HIV? Or did you think you can die from it?”
“Well, I’m doing PDHPE at school, and there’s a health unit,” said Amari. “We also go through contraceptives and STIs.” PDHPE, or Personal Development, Health and Physical Education is a mandatory NSW Education from kindergarten to year 10 which provides students with the knowledge, understanding and skills to enhance their own and others’ health, safety and wellbeing.
At the time, Mel says 13-year-old Johannes asked “how did you get it?” Without too much detail, I explained that I made a decision when I was younger, and got it from somebody through unprotected sex.
I think one of them asked me how long I’ve had it, or where did I get it? I shared with them I was diagnosed with HIV after we came to Australia. Then I took them on a journey about our life since then, including coming into contact with Positive Life NSW and getting support from other people who also lived with HIV.
After we started coming to Positive Life events, I remember one time they asked me, “why do we come to these events?” At the time, I wasn’t ready to share my diagnosis with them, so I was vague and said something like ‘it’s just, you know, to be positive, like for depression.’ They were like, “yeah, all right” and didn’t ask more questions.
Mel reflects, “that night at dinner, after I told them I have HIV, we talked about it a little bit more, and then it was just like, so how’s the weather?
“It was very normal,” said Mel. “I think I’ve been really lucky, or maybe because they’d been with me to so many Positive Life events, they could see I was gonna be okay. It wasn’t a fearful thing to tell them or anything. It was more just like, ah okay.”
“I just know that you’re in good hands,” says Johannes. “Your medication is gonna keep you alive and well. I know nothing really bad is gonna happen. You’re in good hands.”
“What do you mean, I’m in good hands?” asks Mel.
“Like you’re still the same, okay, just living a normal life,” answers Johannes. “Your medication, your doctors, they’re helping you. Your friends and stuff.”
“I don’t really think or worry about it,” says Amari. “I honestly forget that you have it. Like it doesn’t really affect your day to day life.”
She hesitates, “I mean, yeah sometimes, when you get sick. I know your immune system is a little bit weaker, so it’s definitely a thing to look out for. If I have questions, or if I learn something at school and I want to clarify, I know I can just ask you right?”
They also wanted to know who else knew about my HIV, says Mel. I told them that my parents, their grandparents knew. My brother knew. A few of my close friends knew. They’d been with me many times in hospital waiting rooms, so I talked about the support and care I already get from the hospital and my doctors.
I also shared with them about being on the Positive Life Board and how that’s connected to me living with HIV. As a Black woman, I especially want to inspire other black young women who might be living with HIV. They know I feel that it’s very important for people of colour to be seen in positions of influence and authority, especially as company directors on boards.
Since starting as a speaker with the Positive Life Speakers Bureau, I’ve had a number of conversations with my kids about what that means and what do they think about my work as a speaker. Understandably, they both have concerns about the impact of HIV stigma in the community and discriminatory attitudes about HIV or about people who have HIV. At this time, they have slightly different views about this. Amari thinks it would be cool for me to speak at her school to provide a different perspective on HIV, while Johannes is a little more cautious and concerned about the lack of education. So we’ve agreed to wait until they both graduate before I do any school presentations.
“Why did you wait this long to tell us?” Johannes asks. “Were you planning on waiting a little longer, like when we’re 18 or 20?”
“Good question,” responds Mel. “I was always going to do it when you guys were like 18 and 20. I always had that in my mind. When I told you last May, you would have 15 and 12. I think it was I just found the right moment, and I thought, you guys are mature enough to talk about it now. I think your maturity just kind of made me want to tell you sooner as well in all the things that I’ve been involved with.
“Do you feel better now that you know, or does it really not make a difference whether you know or not,” asks Mel. “It’s less mysterious, now,” says Johannes. “Less mysterious.”
“What advice would you give other women who want to tell their children about their HIV,” asks Amari.
Mel laughs. “I can’t give a hard and fast rule,” she answers. “There’s no definite rule, like tell your kids at 18, or 13. No. I think the right time is more about the maturity level of the child and how they’re doing mentally as well. I would not have told you guys if one of you were struggling in school or have a problem with a friend, or if we’re arguing at home. You know what I mean.”
“The only thing I’d say is just know your child, know you’ll know in the right time. Don’t force it. But also not telling you was not detrimental to you guys. You still lived with me, you still went to school every day. We have a beautiful life. So yeah, it’s just knowing your child. And I know you guys, I think I know you guys now.”
“I’m really lucky that my children are, I suppose, educated about HIV,” says Mel.
“I know that they are a minority, because not everybody has a parent living with HIV. I’m lucky that with any knowledge they learn about HIV, they can always cross reference it with me, and if I don’t know the answer, I’ll can lean on my doctors, my healthcare team or Positive Life.
*Not their real names
Published in Talkabout #210 September 2024
