To be “othered”

11 min readDec 1, 2020

2020 has been a surreal year. We continue to live through a global pandemic which has taken over a quarter of a million lives in the United States. Currently, close to 12 million people are unemployed and millions of people marched in the spring and summer to demand racial justice. And through it all, we’ve lived through the most contentious presidential campaign, an unwelcome supreme court justice and unprecedented fires. The one morsel of comfort I have felt this year is that we have lived through this unreal time together.

2019 was a completely different story for me. It was the year when I dealth with a personal battle I wasn’t armed to fight and one that left me feeling more alone than ever before.

In 2019, not only did I lose my mother to cancer but on February 8th, I found out I was HIV positive.

I will never forget the day. When my doctor shared my status with me, I fell to the floor sobbing and shaking. At the time, I was still taking care of my mom, who was battling tongue cancer, a cancer that took away her ability to speak and eat. She was still fighting for her life, undergoing weekly radiation treatments after chemotherapy and two surgeries didn’t work. I couldn’t understand why my diagnosis was happening at the same time. I was so angry at the world and fed up with having to deal with another “crisis.”

I never thought in my life that I would become — not only a health statistic that I have studied many times since my professional background is in public health (which is quite ironic) — but now part of a community I never imagined I would join. While we know this virus doesn’t care who you are, I am not usually what one thinks of when they envision someone living with HIV. I am a white, 42-year old woman with a graduate degree. I have amazing health insurance. I have housing. I don’t have an addiction of any sort (except sugar but I am working on that). I have a great income and a great career. I have amazing friends and a close family. I live a good life! I am not the stereotype of an HIV patient so many people still carry around ignorantly to this day.

At the same time, this has been a strike against me. Since I am fortunate enough to not be struggling with other compounding challenges like addiction, housing, access to medication or other health issues, despite my best efforts, finding support for someone like me feels impossible in Los Angeles, a city of 4 million people. When you are lucky enough to only be concerned with stigma, you are on your own. This has led to moments of loneliness that I’ve never imagined I would feel. There were periods where I thought to myself “it’s best if I just never tell a soul about my status and pretend it never happened,” which would mean living in secrecy — knowing secrets eat you alive and have you living from a place of shame.

With 2020 being the year of a pandemic, the fear around COVID-19 is also triggering. I do not disagree that it is indeed a serious virus and one that we are learning more and more about each day, but the paralyzing fear around contracting the virus reminds me of what it must have been like when HIV was first identified. I think of those who were diagnosed in the earlier years of the epidemic and the painful stigma, shame, and at times hatred that they endured.

The fantastic news is that HIV is no longer the disease that it was in the 1980s and 90s. The one pill I take daily has kept me at undetectable since March 2019 (within two weeks of being diagnosed). When someone is undetectable, there is ZERO chance of passing the virus onto someone else, even through unprotected sex, a blood transfusion, child birth, or IV drug use. My viral load is so low it can’t be detected in a lab. That’s why it’s called undetectable. What’s shocking is how many people, and I mean some of the most brilliant people I’ve come across in my life, had no idea about this until I told them. Hell…I had no idea until I was diagnosed.

Day to day, HIV is not a big part of my life. Beyond the daily pill I take, I get blood drawn every 3–4 months to confirm I am still undetectable which I always am. That’s it. Nothing more. It’s a pretty uneventful disease for me, thankfully.

Since its peak in 1995, the rates of HIV infection in the U.S. are at their lowest ever, however, the stigma is still overwhelmingly present. And because of this stigma, the number of people who are HIV positive and don’t know it is 15% of the 1.2 million living with the virus in the United States. People have simply stopped getting tested and what’s scary is that you can live up to 10 years with absolutely no symptoms until one day you become extremely sick and learn your t-cell count is almost zero and you may have infected people. In fact, I wouldn’t have asked for an HIV test during my annual physical if I hadn’t had this gnawing sensation in my gut that I needed to ask for it, especially since I had a bad feeling about someone I had been intimate with back in 2018. Because of the progress we have made around HIV and medications, HIV testing is not a part of an annual physical anymore, even if your doctor screens you for other sexually transmitted infections. The fact that you must ask for it is a stigma inducing option within itself.

Source: The Center for HIV Law and Policy. “HIV Criminalization in the US in 2020”

I also recognize that I am now a member of an “othered” community meaning one that, in certain places, is feared. As of 2020, 37 states have laws that criminalize HIV exposure with a maximum sentence of life in prison. In some states, if I even spit on someone who knows my status, I could be prosecuted, even though we know HIV can’t be transmitted through saliva. No wonder HIV testing has significantly declined, especially in the southern part of the U.S. where rates of HIV are the highest in the country along with the most draconian laws.

Other sexually transmitted infections are not criminalized even though an infection, like human papillomavirus (HPV), can lead to cervical cancer in women which can be fatal and the herpes simplex virus doesn’t have a medication available to stop transmission while HIV does. I am 100% against any criminalization of any virus but I am furious about the backward policies that are still present which contribute to punishment and shame leading to many more infections.

The media also plays a role in continuing an old narrative around the virus. While there is a place and a need for stories to be told of communities that were greatly impacted at the height of the epidemic, I want to see the narrative catch up with the lives of those living with the virus in 2020. A perfect example is the show Pose. I am a huge fan. It’s an important show that we need to see and it’s worth being celebrated. But, at the same time, I want to see a television show with people living normal healthy lives who are HIV positive. I’d love to see a story showing a discordant couple (where one person is HIV positive and the other is negative) where HIV is not the center of their lives. In fact, it is the peripheral because no one is sick, the HIV negative character remains negative, and no one is dying of AIDS. Again, I understand that having HIV positive characters who are gay men or black women is important since representation matters, but I’d also like to see more diversity of people living with the disease shown on TV and in commercials for HIV medication — because it doesn’t just impact gay men or black women. It impacts everyone.

For the most part, I’ve been fortunate enough to be supported and loved by those I have shared my status with. The fear and judgement I have experienced from a few people and/or the misinformation and hateful comments I have read or heard in the media about the threat of my existence has unfortunately caused a lot of personal pain. I’ve had a few moments which made my jaw drop such as my orthopedic doctor asking how I got it, which is none of his buisness and suggesting we only do video appointments during this pandemic since I am in a high risk category which I am not since I am undetectable and my immune system is just as strong as anyone who is HIV negative. And this is a doctor?

When someone fears me because of my status, they are not seeing me as my full self. I’ve learned through this diagnosis that until you have experienced this type of fear targeted at you, you don’t know what it is like to be “othered.” Fear is debilitating for both the one being feared and the one fearing.

When dating, I rarely reveal my status unless I see potential with someone. There is always the chance of being rejected when I share my status. It always hurts when someone doesn’t understand they are at absolutely no risk of contracting the virus from me and choose fear to guide them. It’s almost as if every other thing that they love so much about me goes out the window because of this one part of me that feels so small — it’s like a crumb in my life. And what sucks is I have to do this over and over and over with each new romantic interest that enters my life.

I now date slower, taking my time getting to know someone to determine if they are even worth sharing this information with. If I don’t feel safe to tell them my status, then I am sure not going to feel safe being in a relationship with them and I am happy to say goodbye and not waste my time. When I did tell someone recently who I liked and they couldn’t accept it, though it deeply hurt, it also showed that this person wasn’t the right person for me because if they couldn’t deal with this, how were they going to show up if I was diagnosed with something that they could contract or would impact their life on a much bigger scale?

I understand taking some time to learn what it would be like to date someone who is HIV positive before moving forward. I am in full support of educating yourself and asking questions but if you don’t ask questions, don’t educate yourself, or choose fear over reality, you are contributing to the stigma.

When someone chooses seeing me as a full human being and not just a diagnosis and they become part of my daily life, they soon realize the stigma is the biggest part of this virus, nothing else. Dating someone with HIV will more than likely be no different than dating anyone else and HIV would not be the biggest hurdle to overcome in a relationship.

I will forever remember February 8th, 2019 as the day my life drastically changed. While I am still coming to terms with this diagnosis, I don’t think I would go back and change anything about the situation. Since being diagnosed, I have created the type of relationship I wish I had with myself years ago. I am more authentic than I have ever been and I show up for myself in ways I never have before.

As hard as this diagnosis was, it confirmed that there is no way I can “understand” what someone else is going through if I have not lived their daily experience. It’s taught me that it’s easy to believe I am a compassionate, empathetic person but how am I really showing up for those who are “othered” in the United States? How am I educating myself on things or people I “fear” so I can confirm if that “fear” is actually necessary or debilitating? And finally, how am I showing up for myself in a more loving, forgiving way so I accept this diagnosis and continue to thrive and create the life I’ve always wanted for myself? Being HIV positive has put me on a path to becoming who I am meant to be and for that I am forever grateful.

To be “othered”

Written by Dhananjaya de Silva