To my beautiful son:
It’s hard to know how to start this letter, but I find myself needing to write to you on this World AIDS Day about my having HIV. Right now in 2012, you are only 3 years old and much too young to understand what it means for your mom to be living with HIV. There is a big part of me that wishes I could protect you from knowing for as long as possible, but I know that I cannot keep it a secret from you forever, and that trying to will not make it go away and will only create barriers and make it seem shameful. So, I am publishing this letter on this World AIDS Day to help others who need to and want to understand more about what it’s like to have HIV. But, I am doing so under a pseudonym to protect you from any stigma and discrimination that you do not deserve simply because you are my son.
The theme for World AIDS Day this year is “Getting to Zero”, meaning zero new infections and zero new AIDS diagnosis. When I found out that I had HIV at age 22, it was 1990, and the idea that we could stop people from getting sick and infected with HIV was not even a glimmer of hope. Back then, when I was told that I was HIV positive, there was very little hope. In the 1980s and 1990s, people were dying all around me, there were no good treatments for the virus and the transmission of HIV from a mother to her child was 25-40 percent. When I was diagnosed, a swirl of feelings overtook me—shame, fear, guilt and loss; the one clear thought that emerged was, “I will never be able to have children.” On that day, I just wanted my own mother to come and get me and comfort me. I remember seeing the tears that had fallen to my hand and being so afraid that she would not want to touch me. But she did. On that day, she took me up in her arms and we sat there together and cried. She knew that the HIV virus does not punish or discriminate, and most of all, she understood I had nothing to be ashamed of. I was so very lucky to have her support.
After my diagnosis, I was so afraid of people finding out and what they would say about me. Instead of keeping it a secret, I decided to disclose my status very publically to help other young people, especially young women. Speaking to the media, writing my story for publication and speaking to teenagers to help them not get infected were how I got out my message. But as I grew older and didn’t die, I found that I didn’t need people to only know that about me, and I came to believe that my HIV status wasn’t the only way that I could be defined. I had so much more to offer the world. And so will you.
But, as I grew older, I did wonder more and more about who I should tell and when. Did I need to tell my yoga teacher? Did acquaintances I made in my graduate master’s program need to know? I started to resist being just defined by this very difficult experience of having HIV, and it was freeing not to feel that I had to tell everyone. My loving husband, your father knows. And now so do you.
You just turned 3. It is an amazing time to experience your growing and changing every day. You are truly delightful, spirited and forming a sense of yourself. There is a sweetness that is emerging—sensitivity and inquisitiveness. You want to know why things happen, how they happen, what the reasons are … anything from why it rains to why do dogs lick you, or why Dracula is scary and why you sometimes get mad (and don’t know how to express your feelings well enough verbally). Soon you will want to know about the pills your mom takes and about the doctor’s appointments she has to keep. I promise to keep answering your questions and that when you start to ask about my HIV, I will answer them with honesty, kindness and thoughtfully. That is what family means. Honesty, openness and unconditional love.
Growing up, I didn’t learn much about my body, that there were STDs and HIV that I could get – a lot of families don’t know how to talk about sex. I wish that my family had known how to help me to respect myself more and learn about my sexual health. You can count on your father and me to talk with you when the time is right about the importance of you as a whole person and sexual being, and we will tell you that you have a right to honor your own body and you have the responsibility to honor and respect others’ bodies too. One of the places where I think we can help “get to zero” is to encourage families to start talking about sexual health, including HIV in their homes. I am hoping that your knowledge of HIV and what it means for me, you and our family will be a natural part of our conversations together. One that changes and develops as you grow older and can understand more.
When I became pregnant with you, 18 years after my diagnosis, I was very open with my doctors, close friends and my own family. I wanted more than anything to make sure that you would be born without the HIV virus in your body. Waiting for your first test results was one of the hardest days in my life. You were born free of HIV. Thanks to my medical care, the chances of you not having it were 99 percent. Nonetheless, I still worried about that 1 percent.
Now that you are getting older, I am starting to think about our community, and how our family with my HIV fits into it. I haven’t disclosed my status to people who are close to us, but that is partially because I am sometimes afraid of people’s reactions, being pitied, judged or even feared. Telling others I have HIV is not something that comes up easily in conversations with other parents at the park, soccer class or at the pool. Yet, now that you are getting older, I have to be brave and work to create as safe a space as I can in your family and community to be able to talk about HIV. I will work to create an environment that supports safe and voluntary disclosure of HIV for me and for the millions others like me.
I am already so proud of your loving kindness and open heart. I know that our family, including you, will help our world “get to zero.” You can count on me to continue taking care of myself and by being honest and speaking out; and by taking my medications, seeing my doctors, and most of all by sharing my story.
On this World AIDS Day, I want you to know that my story will always include you, my wonderful and healthy son.
Your proud mom
Originally published in the Altarum Health Policy Forum, a weekly journal for debate and discussion about health care and health policy.