Growing up Poz and trying to follow American Society’s guidelines for dating and hooking up has been extremely difficult. The guidelines that we follow as a society in regards to dating and having sex weren’t created for people with HIV in mind. They are not inclusive of a girl like me.
Truthfully, I started experiencing my first real feelings of exclusion from the rest of society when I started becoming interested in dating and learning about sex. Initially, when I first started learning about HIV, I thought that I would never be able to have sex. The first person to talk to me about HIV and how it is spread was my social worker at Children’s Hospital, Los Angeles. Crazy huh, because you would think that it would have been my parents who first spoke to me about my experience. In hindsight, I am sure they wouldn’t have known really too much about what to tell me either. And I mean my social worker did not say directly that I could not have sex, but she told me the modes in which HIV is spread: for example, through unprotected sex, through IV drug use, through pregnancy, childbirth, and breastfeeding, through blood transfusions, etc. I didn’t fully understand what all of that meant at the time, I was only about maybe 11 or 12. I can imagine that other kids my age probably had never learned anything at all about HIV/AIDS, or even worse, never even heard of the words. My social worker didn’t go into too much detail about sex, or the fluids that transmit HIV, or using condoms, or anything like that. I was still too young at the time, and I didn’t know anything about sex, let alone about safe sex, or about what I was supposed to do if I ever had sex, given the fact that I was HIV positive. From what I had learned thus far about HIV, indirectly, I thought that I wouldn’t ever be able to have sex, or have babies.
The next time I learned about HIV and about sex in general was in a health education class that I took in the 7th grade. To say that class terrified me would be an understatement. That class made me afraid to want to have sex, and further added to the notion that someone with HIV wouldn’t be able to have a normal HEALTHY sex life. It taught me about other STIs, and after listening to the reactions of other kids in the class I remember thinking in my mind I did not like how they portrayed my experience. This was the first time I blatantly remember being face to face with the STIGMA surrounded by HIV/AIDS. The Health Educator in this particular class never discussed TREATMENT for HIV/AIDS, or how it works to lower the amount of virus in a positive person’s blood. Nor, did the Educator discuss how treatment works to lower the chances of someone spreading HIV to their partners or their babies. The health educator also didn’t talk about treatment for the other STIs, either. Instead they showed a bunch of pictures of the other STIs and what the symptoms look like, without mentioning the fact that most of the time it doesn’t even look like that. You have to be even more careful, because a lot of the time people show no symptoms and they don’t even know they have an STI until they are tested. The pictures they showed of people with HIV were images of gay, white men or Africans. And they were images of people who were really sick and wasting away. There were no pictures of people who were healthy and living. Everyone left class thinking that if you have sex you could get HIV (or another one of the other “nasty” looking STIs) and if you get HIV, you are going to die.
That health education class also never discussed DISCLOSURE. The only thing I had learned about this topic was from my Aunt who raised me. She told me right before I went into middle school to be careful who I shared my business with, because people in this world can be cruel. I didn’t understand what she meant at the time, but it didn’t take me long to find out. Everything I learned in regards to how I was supposed to go about having sex in our society, I had to learn on my own. Throughout my years of dating I have had many different sexual experiences, some good and some not so good. I used to think that I would never be able to have sex without a condom. Imagine going through your adolescent years thinking that if you had intercourse with someone or received oral sex without protection that you would pass the virus. That really affected the way I thought and felt about myself physically, and it would mentally get in the way when it came to me being intimate with someone. And since everyone I have dated thus far in my life has been negative, that means I have also had to accept and be consciously aware of the fact that even though they all made the decision to still want to risk having sex with me, they didn’t really know too much about what they were getting their selves into and they were still inherently scared too. Growing up, not only did I have to take the initiative to educate myself about what I could and could not do, but I also had to attempt to educate everyone I dated too. And let me make sure I emphasize the fact that all the information I was receiving about my experience was still in the process of being researched and studied.
I have had 5 real relationships thus far over the course of my life, (not counting the two I had in middle school, those were just puppy love ☺) and in all of them I was really young. I didn’t even know how well the medicine worked. Luckily for me they were all lesbian relationships so the sex was a lot safer to begin with, because all we did was have finger sex, use straps, and have oral sex. This may be too much information (TMI), but there is a purpose to why I am being so transparent. The oral sex was probably the riskiest thing, and each time I received it protection was used until I experienced my last relationship. I was in high school when I experienced my first two relationships. But in my later 3 relationships, I made sure that we went to go get tested at least every 6 months. So that they could see for their selves that they had not contracted HIV, and to make sure everything was good. We should have been getting full panel STI checks to make sure that they weren’t bringing me back anything, but that just goes to show the extent in which I was worried more about my partners’ lives instead of my own. Sometimes, the precautions that some of my exes would take to ensure their safety made me feel “dirty”. And I put dirty in quotations marks to emphasize how stigmatizing it is. I absolutely hate that society uses that term to refer to testing positive, or clean to refer to testing negative. Anyone who knows me knows that regardless to my HIV status that I am not a dirty person by far. In one relationship I was in, my partner would take the time to inspect their fingers before we had sex, and if they saw even the slightest cut they would put condoms on their fingers. I understood at the time, because I wasn’t taking my medicine consistently, and that person was scared. However, sex isn’t supposed to be something you FEAR. Sex is supposed to pleasuring and FREE. I got the chance to explore sexual freedom in the last relationship I was in. The person I was with at that time insisted to me that they did not care about the risk, and loved me enough to want give me that experience of receiving oral sex without a condom. Although that relationship didn’t work out, I will forever be grateful for the experience. It taught me a lot. This is when I first learned that HIV wasn’t as easily spread as I thought it was.
We are not in the 1980s anymore. Although we have lost millions of people from this pandemic, there are also thousands of long term survivors who have lived through the dark times with this illness and who can attest to how far treatment and research has come. The term Undetectable had not been something that there was a lot of knowledge about during my adolescent years, as I was growing up. Undetectable refers to the amount of virus in a positive person’s blood sample being below 20 copies. The lower a person’s viral load the harder it is for them to transmit the virus to their partners or babies. WHEN A POSITIVE PERSON IS UNDETECTABLE THE CHANCES OF THEM PASSING THE VIRUS TO SOMEONE ARE NONE. Undetectable = Untransmittable is a game changer. For me this means that people who are HIV positive can now LOVE WITHOUT FEAR, and there is now evidence that will back that notion up. U=U finally became proven through several partner studies beginning in 2015. And even the term Undetectable has been redefined over the years. In the past Undetectable was considered a viral load under 1000, then it went to 500, then to 200, and now it is under 20. When you are adherent to your HIV medication managing your viral load to stay under 1,000 (IDEALLY 20) shouldn’t be hard, unless there are barriers as to why someone isn’t taking their HIV medication or staying in care.
And in my opinion the biggest barrier I have seen to care thus far is the STIGMA. The stigma is killing people, more than the actual disease does. I have watched this happen many times, when someone is newly diagnosed they internalize that stigma. And a lot of the time this leads the person to fall into this deep depression, and then they start to plummet into this downward spiral. They start to believe their lives are over, and they will never be able to lead a normal healthy life, or find love again. They begin to isolate themselves, and not reach out for support or refuse to get into or stay linked to HIV medical care. In my opinion, it is because they do not want to accept the fact that they are positive, and they struggle with this sort of pre and post diagnosis identity crisis. I do not have a pre diagnosis identity to refer to, but I do know what it is like to internalize this STIGMA that has been programmed into our minds. For as far back as I could remember the way my experience was being taught didn’t sit well with me. How can we expect for people to not be afraid of what they don’t know, when everything they have learned about HIV/AIDS has inspired FEAR. How can we expect people to be fully aware of the topics surrounding HIV/AIDS when the information that we have been receiving isn’t typically presented from a space of UNDERSTANDING the experience holistically? How can we expect to get to an AIDS Free generation if we continue the same rhetoric? 90% of all new HIV infections come from people who are positive and unaware of their status, or from people who are positive and not on HIV medication.
I’m not trying to turn living with HIV/AIDS or any STI, for that matter, into a positive. I’m just trying to share my experience in hopes that it will shed light to the problem. Maybe I am crazy, but obviously the way we have been going about things is not working. I like to stay solution focused, and there is a way to dramatically reduce the spread of HIV and other STI’s. It could all be so simple. We just have to be willing to collectively change the way we go about having sex and hooking up, we have to dispel that stigma, and change the way we talk about STI’s. And we have to be more inclusive.
The Well Project is a non-profit organization whose mission is to change the course of the HIV/AIDS pandemic through a unique and comprehensive focus on women and girls. Visit their website, www.thewellproject.org, to access fact sheets (English and Spanish), blogs, and advocacy tools, and to join a global community of women living with HIV.