19-year-old TikTok creator Zach Willmore is empowering his community of more than 2 million followers by openly discussing his life with HIV.
When did you first start your journey into social media and content creation?
I started my journey into social media in my sophomore year of high school. Right before quarantine, one of my friends told me that they thought I had the personality for it. After that, with all the time I had during quarantine, I was really able to explore who I wanted to be as a creator.
How did it feel when you first found out about having HIV, and how have your feelings changed in the past year?
When I first got diagnosed with HIV, I felt like my world was ending. I had no education in what the diagnosis meant or what HIV even was. One of the most helpful things for me throughout this process was creating video diaries to help me process my emotions. After a year of living with the diagnosis, I have realized that HIV is not a death sentence but rather a hiccup in my day-to-day life. After I got on medication and became undetectable, I started to feel like myself again and my life began to go back to normal.
The hardest part for me was dealing with my own mind. I would sit up at night thinking about how long forever was. I have this diagnosis forever, I will be taking medication forever. Those are the things that were hard for me to overcome. The thing is, the past year has been one of the best years of my life. I have amazing friends, I’m doing well in school, and I even have a boyfriend. Forever is a long time, but you just have to take it day by day. And at the end of the day, I take a pill in the mornings and I go about my life.
What made you decide to share your diagnosis on social media?
When I got diagnosed with HIV, I started making video diaries to help myself process it. The reason I decided to post them was to help other people. There is a reason that they have you come into the office to give you your diagnosis instead of telling you on the phone, and why they give you a social worker after that diagnosis. Suicide rates are disproportionately high for people who receive HIV diagnoses, and a lot of the reason for that is because it’s kept hush-hush. Without the support system I had, I would have been at risk of becoming a statsistic.
I wanted to help people without that support system by showing what life is like after the diagnosis. I wanted people to be educated and to understand exactly how the virus interacts with CD4 cells and how the medication works. It’s awful that people feel like they have to throw away something so valuable for something that’s completely treatable. I hoped that by being so open with my diagnosis, I could be part of breaking down the stigma and helping people live the lives that they deserve to live.
Can you speak to the importance of LGBTQ+ visibility and HIV representation in social media?
Visibility is one of the most important things when it comes to HIV. I cannot tell you how many DMs I’ve received telling me that I have saved their life by sharing my story. By keeping your HIV diagnosis quiet and not talking about it at all, it makes people feel ashamed. It’s hard to see the big picture when you don’t see anyone else living through the same situation you are in.
Even coming from the opposite end of things, by sharing my story and seeing those DMs of people sharing their stories with me, I felt comfort knowing that other people were on the same journey that I was on. From sharing my story, I also realized that because of the limited visibility, a lot of people still think that HIV is a death sentence like it was in the 80s.
How do you balance your own personal boundaries in your everyday life with your online social media presence?
It can be hard to draw the line between what is too personal to share on social media and what is fine to post. For me, the boundaries I’ve drawn are more fitted to each individual situation. I like to run through the thought process of, “What will posting this do for others or do for my career?” Sometimes posting something super personal like my journey with HIV is worth it because the impact it could have on other people is worth it. However, other times I have to ask myself if people really need to know something like how dehydrated I am which made my pee a darker yellow. That has no impact on anyone, and it wouldn’t further my career at all. It would just make people think that I’m weird.
What advice would you give to others who may be navigating a similar journey or facing an HIV diagnosis?
My biggest piece of advice for people navigating their journey while facing an HIV diagnosis is to take things one day at a time. The times that I’ve spiraled the most have been when I start thinking about how long the diagnosis will be with me instead of living in the moment, taking my medication, and going about my life. I also think it’s important to recognize that a lot of the stigma is in our own heads.
At the beginning of my diagnosis, I would legitimately block myself out of romantic relationships because I would tell myself that I wasn’t deserving of one. Even after I told them about it and they said they were fine with it, I would think that they were lying. “How long is this going to last before they realize that what they’ve said yes to?” or “No one could ever love me because I am diseased,” would run through my mind until I would break off the relationship or sabotage myself. I had to start checking myself when thoughts like those came into my mind.
I had to start trusting people when they said they were OK with my diagnosis instead of always assuming the worst. That’s why when I finally was ready to have a boyfriend, it’s when I was finally OK with my diagnosis.
What projects do you have coming up that you’re excited about?
I have a couple of projects coming up for myself! I am about to start my own men’s lingerie brand for guys like me who want to feel pretty. Clothing has always been my passion, and with my struggle of feeling pretty after my diagnosis, I know it’s a perfect fit for me. Lingerie made by twinks, for twinks, but anyone who likes rhinestones can wear it.
