Having a baby is supposed to be a time filled with happiness, excitement and hope. My husband and I were over the moon when we found out I was pregnant, so of course on the day of our first ultrasound scan we couldn’t wait to see our baby on that black and white monitor screen. The moment we first set eyes on our baby, it should have been magical, but rather than the doctors asking the usual conversational questions of excitement, Do you have any names picked out? Do you think baby will have mum’s or dad’s hair? my world came crashing down with four words: You are HIV positive.
It felt like some sort of sick, cosmic joke. A pregnant woman diagnosed with HIV? Where do you even hear something like that.
I couldn’t help but think I had already failed my baby, and he wasn’t even born yet. What chance could my baby have in life with a HIV-positive mother? What would he think of me? Would he still love me?
After my diagnosis, I spiralled into a dark pit of depression. I was plagued by intrusive thoughts that my husband and baby would be better off without me, that they deserved better than a HIV-positive wife and mother. Every day, I woke to crippling, self-deprecating thoughts and almost acted upon them. This mental torment was the worst part about having HIV. The irony was that I inflicted this anguish upon myself. And for what?
Although modern medicine has advanced to the point where having HIV is no longer a death sentence, and the majority of those of us with the virus are able to live healthy “normal” lives, the sad fact is there is still a stigma around HIV. Even uttering the words HIV or AIDs feel like loaded, weaponised vocabulary that carry shameful connotations to tarnish those with the virus.
The implicated disgrace of being diagnosed as HIV-positive during pregnancy completely dismantled my self-worth. I felt like I was defective, deserving of all the negative stigma associated with HIV and a lesser person because of it.
These negative nuances of HIV being imposed upon me made me furious. I couldn’t change the fact that I have HIV, but I was not about to let outdated information or poor education about HIV bare any ruling on my life. I wanted to prove to myself that the stigma of having HIV was not something I was willing to burden myself with.
So, I decided to treat my HIV like it was nothing. I was open about my diagnosis with the people in my life. I proudly took my medication in public if I needed to. I embraced my HIV. And after a while, uttering the words “I am HIV-positive” stopped stinging so much.
I won’t pretend that any of this was easy, though. It took enormous amounts of mental strength, therapy, and the support of my husband to help me be okay with having HIV. Even now, 14 months after my diagnosis, I still struggle from time to time, but I always come back to the same thought: HIV doesn’t define me.
Through learning to accept my diagnosis, I couldn’t help but think it would have been so much easier, more comforting even, if I had someone to look up to in my same situation. But the simple fact is, straight women with HIV, even more so pregnant women with HIV, are grossly under-represented.
I wanted to help other women or expectant mothers who have been diagnosed with HIV to feel comforted that they are not alone, to help people with HIV unapologetically embrace their diagnosis, and ultimately to enable my own HIV to do something good in my life as means to counteract the stigma of the virus.
At 5 months pregnant I took myself to TikTok and posted my first video about being diagnosed as HIV-positive while pregnant. I wasn’t expecting much traction from this video, but very quickly my story gathered a following. Before long, people started to ask me questions about HIV, wanting to learn more about the condition from how to get tested, what medication is available and what it means to be ‘undetectable’. Through my videos, I am able to educate thousands of people about HIV and show that it doesn’t prevent you from living a healthy, happy life.
I think there is something about seeing a pregnant woman be diagnosed with HIV and come out the other side healthy with both a HIV-negative husband and baby that really shook people. Pregnancy is typically an emotional, tender, nurturing time so for this to be overshadowed by being diagnosed as HIV-positive seemed to garter a lot of sympathy and compassion for my situation and HIV as a whole. It’s not a story you hear often, if at all, so it’s something that really sticks with people.
Accepting and embracing my HIV diagnosis while pregnant has been that hardest thing I have had to do in my life. However, this journey has undoubtedly made me stronger person and enabled me to love myself as a whole. Sharing my story so publicly proved to be an overwhelming cathartic experience, allowing me to take all the bad, all the negative connotations and transform them into something positive (excuse the pun). I hope that by sharing my story I can help people feel less shame about having HIV and learn to love themselves just as they are.
