Video #1 Manuscript
The Betrayal was to the Bone
By Shelly Tognazzini with Edmond Kilpatrick
Unfortunately, or not, I was knowingly infected. Initially, the betrayal was worse than the diagnosis itself because I had been living with someone who knew he was HIV positive. He had been positive for 14 years, and never told me. We lived together for two years and I didn’t get sick, until I did. I went to Emergency three times and they kept sending me home with the flu. The flu! The third time they sent me over for an endoscopy to check my esophagus and discovered six esophageal ulcers. When they finally tested me for HIV, it was the ears, eyes and throat specialist who did the endoscopy who had to tell me the news. He had never given an HIV diagnosis in his life. So, it was really weird. While he was talking, I watched him go back and forth with his hands. I’m watching his body language and thought, “Ok, this isn’t good but what is it?” And he said, “Well, the good news is that you’re not Hep C positive, however, you have tested positive for HIV.” And that’s what he was doing, he was balancing Hep C and HIV in his hands.
He was telling me it’s only this one, it’s ok… And I thought, “Oh my God, that’s the good news?” It was an awkward conversation. He said, “I want you to call these people, and the public health nurse is going to call you, and here’s the referral. Thanks very much, I have a meeting.” Literally, it was not even five minutes. And he walked out. When I came out the nurse said, “would you like some water?” I said, “No, I’m fine.” And she said, “Thanks very much, have a good day.” I went, “Oh, ok bye,” and I never saw them again, because that was the Emergency referral right, and I was immediately in the hands of the other care providers.
They knew from my viral load because of where I was at zero conversion that it was an acute transmission contracted within a certain time frame. [But], because I had only had sex with one person, it was obvious to me who it was.
When I first met him, he was initially real stand-off-ish and didn’t want to know anything about me. He just came out of the bush, this outward-bound kind of guy. He was a rugged sailor and asked me to go sailing with him by saying, “You’ll never make it, but if you want to come, you can come along.” So, I finally took him up on it. That was the basis of our relationship. There was no past. It was all about being present in the moment and learning to sail. It was one of the first relationships where I thought, “Wow. This is so cool. We don’t have to talk about ex’s and our history,” without knowing that the reason we weren’t talking about it was because he had so much to hide. He didn’t want to talk. And I didn’t ask questions. I didn’t protect myself. I was a consensual partner, and I should have been responsible for my own risk.
His betrayal came from an attitude of shame and fear. I mean, he had hidden quite a bit more from me than just his status. It was a personality trait of his. He had issues that he was unable to deal with and wasn’t dealing with. He definitely had a really hard life and had risen above it in spades like many survivors do, and you go, “Wow! How the hell did you survive?” He had a love of things that I love like, movement and sailing. You know, we had so much else to have fun with that even the sex we did have, which wasn’t the basis of our relationship, really, gave us so much joy.
He is fully aware of what he has done. I was betrayed and it drove home how awful and hurtful it is to be, not just lied to, but not given the full story. I think that is partly why I am so out with my status now.
I believe 100% in ending the criminalization of HIV. To me, criminalization of HIV hits home after having experienced the reality of non-disclosure. It makes no sense at all and it contributes to the stigma of HIV. My ex wasn’t taking his meds while we were together and knew he was positive. I could have charged him and would have won hands down. But, I couldn’t, it just felt wrong. Even when it crossed my mind, or people told me to, I couldn’t wrap my head around it. How could I blame someone else when I was not responsible for myself.
The charge in Canada for non-disclosure of HIV is Aggravated Sexual Assault, and the law applies to exposure as well as transmission, regardless of whether the accuser tests positive. This can lead to serious penalties and jail time and] it undermines the very practice of disclosure between consensual partners. It fuels the stigma around getting tested, and contributes to the myths of HIV transmission. Why didn’t I worry about protection longer into our relationship? Why didn’t he worry more about using a condom? He didn’t think about it, or even worse care about the risk. Especially, since he wasn’t taking meds? He’s a smart man. He knew. But, why didn’t he care? When I asked he honestly said, "I couldn't tell you about it because the longer we were together the more ashamed I was to tell you.
The shame that silenced him came from the stigma around disclosure. The media has been brutally offensive in this regard. The media is so in favour of criminalization that they don’t show the other side to it. Of course, you don’t hear the outcomes of these reports because they sensationalize the charge and the act as predatory. The media plasters the accused's pictures on the front page making them guilty before proven innocent. They thrust the HIV positive person into the public domain and label them as sexual predators, and the public buys into the propaganda while forgetting or ignoring the scientific facts. These cases have destroyed lives across the country by trying to ‘protect the public’ even if the persons accused have not even transmitted the virus.
Why is it that HIV is the only blood borne pathogen criminalized? It makes no sense. If that’s the case, Hep C was incurable at the time I was diagnosed and why wasn’t it criminalized too? Why would that have been any different? Why, if they’re criminalizing one blood borne pathogen disease do they not another? And, how can they discern what’s sexual assault when consent is present. Is non-disclosure of an STI grounds for an assault charge? Really?
Now, the science shows that being undetectable means the virus is non-transmittable. The whole notion of U=U, (undetectable equals untransmittable) is wonderful news but it’s not on firm ground because the law does not support it. When someone consistently takes their retroviral medication and tests undetectable for six months there is virtually no risk of transmission. The charge for non-disclosure of HIV then makes no sense. The Canadian government recognized this on World AIDS day, 2017, now, how long will it take for the law to actually change and the courts to reflect this? For the law to actually do what’s right it must be upheld by the science and not be driven by outdated fear and uninformed public perception. It is a significant breakthrough that some provinces will no longer persecute people with HIV for not disclosing to partners, but the rest of the country is yet to decriminalize HIV and comply with the current science. To change people’s perceptions, the media has got to get on board to reduce the stigma.
My ex disappeared for a week when he found out I was diagnosed with HIV. He wouldn’t pick up his phone because he was afraid I would charge him. There was no response. He knew how shaken I had become after my diagnosis. I spiraled into a dark place, a deep depression. I shaved my head, quit my job, and I couldn’t cope for a few months. It’s a blur actually. I just remember trying to wrap my head around any kind of future. I felt so ashamed and stunned that the diagnosis was actually real, that I was HIV positive. It shattered any sense I had of the future. So, when he did come back, it mattered so much to me. We didn’t stay together, and we never had sex again, but, I can say now that we care about what happens to one another.
We shared care for a while and consoled each other in a lonely time. He became supportive of whatever I needed to do, and that included full disclosure on his part in front of a professional. That was really important for me. I wanted to hear why he had betrayed me to that degree. And because he had been living with it for so long, why did he think it was OK not to use protection? We did practice safe sex for a long time and then we just stopped. We were living together and I thought,“I’m not getting pregnant. I’m over 40. We’re fine.” And, you know it wasn’t like he withheld his status from me maliciously. He didn’t. That’s the bottom line, he didn’t. He just did it. And that’s what made me say, “What the fuck!”
There is absolutely no evidence that criminalization supports public health, or deters people from engaging in risky behaviour, or that it encourages disclosure of your status, or most importantly that it protects the public. The media sensationalizes the HIV positive person as a sexual predator and the ‘unwitting’ accuser as a victim, and the whole story plays out as a he said she said scenario. These are mostly heterosexual men getting charged, their lives destroyed, and to what end? What does it accomplish? Was I not responsible for my own protection? We both were. It's not rape, it’s non-disclosure of an STI. And if the criminalization of HIV is there for public safety, then why do the charges need to be so extreme? I was a consensual partner. The crime does not match the punishment. Instead, it fuels the fear and stigma surrounding HIV.
I was truly devastated and forever changed by one betrayal. Over time, the betrayal was far worse than the diagnosis. It haunted me for years and kept me from building new relationships or being able to trust anyone, especially about their sex life, status or history. I haven’t had sex in years because of it. But, I was there too. I am responsible for my own body. I feel strongly about that, and I take responsibility for not asking or using protection. I am not speaking to women that were violently assaulted or raped, obviously that’s different, but those are not the cases before the courts. I’m talking to women and men who choose to charge consensual partners because the law says they can.
Ask yourself, if aggravated sexual assault is the charge is he or she really a predator? Were you a consensual party protecting yourself and mitigating the risk? Were you responsible for your own body? Are you prepared for his or her word against yours? Or, for sharing needles with a stranger to be a confrontational charge? It becomes a blame game, and criminalization is not the answer.
Testing, treatment, and protection from all harm, the ability to disclose your HIV status without shame, stigma and discrimination, personal responsibility and compassion, universal access to meds and removing the criminalization of HIV, these are the answers for me.
Until there’s universal access to medication globally, until criminalization is taken off the table we don’t have the answers. There is no cure for the virus, so an end to HIV involves two things: global access to medication for everyone from sub Saharan Africa to Greenland, where nobody points fingers and blames; and criminalization must be taken off the table.
When HIV is not a criminalized disease, and individuals take responsibility for their own self, the stigma will shift to empowerment. Empowered to practice safe sex and talk of one’s HIV status and get tested and fight for those who have no voice. It’s not over yet. We need to move past the shame. U=U, undetectable equals ‘untransmittable.’
That’s the science now. The stigma and shame still have so far to go.