Chatty CATIE: Positive Parenting
We asked 4 poz parents: How do you talk to your kids about HIV?
Interviews by RonniLyn Pustil, Alexandra Murphy and Debbie Koenig
MARISOL DESBIENS, 38
Mother of 2
Sadly, Marisol Desbiens died suddenly on May 18th, 2016. Marisol was very involved in doing community work and was a dedicated and trusted community facilitator for CATIE’s Hepatitis C Ethnocultural Project. We wanted to share her story and insights with her family, friends, colleagues and other Positive Side readers. We extend our condolences to her daughters and to the many people whose lives she touched.
When I was diagnosed, my daughters were three and four years old. I first told them that I was HIV positive when they were 11 and 12 because their father was hospitalized and the whole family showed up—they all knew about his HIV status but the girls didn’t. The social worker was concerned that the girls would find out from their cousins.
Once my husband’s health had improved, I decided to tell my daughters about mom and dad being HIV positive. At first they were shocked, confused, anxious and sad. They didn’t know what HIV was. Their first question was: Are you going to die from HIV? I told them, not as long as I take my medications every day, see the doctor regularly and take care of myself.
I asked the Teresa Group [an organization in Toronto that serves families affected by HIV] to help me talk to my girls because I was concerned about their emotional and mental health. A family support worker talked to the girls in a way that they could understand. They had weekly counselling sessions until the girls were more comfortable and knowledgeable about HIV. The support worker answered their questions and helped them deal with their emotions.
When the girls were little I used to tell them that I needed vitamins. As they grew older, they noticed that the medications were not vitamins, but they never confronted me about it. Now they know and they are not worried or scared. When I disclosed to them, they were happy that I trusted them enough to tell them the truth. They said if I had kept it a secret, they would have been disappointed and angry with me because that would have meant that I didn’t trust them. It’s better for them to know because they can support me, love me and care for me, and that’s very important to them.
I’m now more confident when it comes to educating my daughters about HIV and we continue to have conversations about it. When it comes to sexual health, I feel that my job is to help my daughters fully understand HIV so that they can protect themselves from high-risk behaviours, such as unsafe sex and unsafe alcohol or drug use. Sometimes we talk about what they learn at school, for example, that people can get HIV through kissing. I have to educate them and tell them that you can’t get HIV that way.
I’m happy to be free from worry that the girls might find out my secret. They have a right to know the truth, and, as a result, our relationship is stronger because of the level of trust and comfort. They are very supportive and encouraging of me, and I have supports in place for them in case they feel down, sad or anxious. They know not to disclose my status because I don’t want anybody to discriminate against them, especially at school.
Father of 2
Diagnosed with HIV: 2011
Project coordinator with a national Indigenous organization
I didn’t become HIV positive until after my divorce when I became openly gay. It was my first long-term relationship with another man. My son and daughter were nine and 11 at the time; they first learned about my diagnosis when they were 10 and 12.
I knew it was something they needed to know, I didn’t want to keep anything from them. However, I was really scared to tell them, as they were already dealing with so much (the separation of their parents and the everyday stresses of figuring out who they are as people). I didn’t want them to worry about me. They knew a bit about HIV because their uncle is also living with the disease.
My ex-wife and I are not on good terms and she does not allow me to see the children on account of my being gay and living with HIV, so I had to tell them on the phone. This was very difficult to do. It broke my heart because I really wanted to be with them to hug them and let them know I was going to be OK.
Disclosure can be difficult on so many levels. It’s about much more than just saying, “I have HIV.” You have to look at the whole picture. Trying to explain why mommy and daddy are not together was hard in itself and not having support from my ex was difficult too. I think it would have been much easier to disclose my HIV status if that was the only thing that needed an explanation. But with children you often have the “why” and “how” questions and the fear that they might not accept your answers and could reject you.
My kids’ reaction was mild. They really didn’t have a reaction as far as I could tell but at that age it’s hard to understand their feelings. They didn’t have many questions except “are you going to die?” My heart got heavy but I felt I had to stay composed. I didn’t want my feelings to scare them any more than I imagined they already were. I explained that I had a good doctor who was taking very good care of daddy.
My children have always been very compassionate toward others and I wanted them to understand HIV. It is only because I became involved with HIV education and peer mentoring after my diagnosis that I was able to even think about having that discussion with my children.
FLO RANVILLE, 48
Mother of 7
When I found out I was HIV positive, my six children were in foster care. (I gave birth to my seventh child a year later.) I had struggled with drug and alcohol addictions for years, which led to them being in and out of foster care
The Ministry of Children and Family Development told me that I needed to tell my eldest daughter, who was almost 12 years old, about my HIV status. I had to disclose to her in a boardroom along with her foster mom. My daughter looked so sad and heartbroken and angry with me.
A few months later, the foster home closed and she came back to live with me. At first when she was angry with me or didn’t get her way, she would call me names and tell me to die already. I managed to survive that time and have regular visits with my other five children.
I told my two boys when they were 13 and 14 because they wanted to know why I had to take so many pills. They were pretty quiet about the news. I tried to reassure them by saying that as long as I stay clean and sober and take my meds every day, I will live as long as anyone else. They would then remind me to take them.
I disclosed to my two youngest children, now 14 and 17, just two years ago. The older one stopped associating with me for about a year. She would only come over for birthdays but now she comes over to visit and joins us for family get-togethers. With my youngest I used a flip chart to show her what HIV is. I taught her about antiretrovirals and how important it is for me to take them. When I asked her if she understood or had any questions, she said, just take your meds mom.
What helped my children move from fear and worry to acceptance? One day my eldest daughter came with me to an appointment with my HIV specialist Dr. Julio Montaner. That was huge. It helped put her at ease. She saw that the people at the immunodeficiency clinic weren’t a bunch of dying people. She heard Dr. Montaner say that I was doing well and that if I continued to take my meds, I would be fine. She was so impressed with him. That helped her to come to acceptance.
When my youngest daughter was born HIV negative, it showed my other kids that the medicines work. I also had great support from AIDS Vancouver for 10 years—they were kind and empathetic and helped support my family. The other thing that made a big difference was Camp Moomba, where my kids got to meet other families affected by HIV.
Today we are happy. We don’t talk about my health—except I share good news that mom has been doing well. We talk about their lives. They are now 14, 17, 19, 21, 22, 23 and 26. And I have two grandchildren.
Mother of 3
Diagnosed with HIV: 2004
I come from Burundi, in central-east Africa. When I was diagnosed with HIV, I was 25 years old and my three children weren’t yet born. Now my kids are one, five and nine years old. In my opinion, they are too young to understand what being HIV positive means, but I’m starting to prepare the oldest one for having this conversation.
I have explained to her that I am a bit sick (without naming HIV) and that I need to take medication every day. I reassure her that the illness isn’t anything serious or anything to be afraid of, and that I will not die from it. I have started to explain to her how it can be transmitted. When she’s older I will tell her that it can also be passed during sex. Right now I think she’s a bit young for that.
One day I will tell all three of them that I’m HIV positive. How will they react? To be honest, I have no idea. The conversation will most likely lead to questions, and I want my children to know that they can ask me them down the road. I think the important thing will be for me to be available to answer their questions as clearly as possible and to stand by them, so that their journey to understanding and acceptance goes smoothly. I do not want to rush the process. And we will seek help if need be.
I expect that the conversation will go well. I have an amazing support system in place. I have a wonderful family as well as other resources and supports, including a great social worker and the organizations I’m in contact with that provide information and assistance to people living with HIV. After telling them, I think I will feel a big sense of relief.