Living with HIV #1

I was 12 years of age, back in Greece. I remember watching TV and a journalist had on the phone two HIV people talking about their experiences. One gay man and one straight woman.

I still remember how the host tried to blame the gay man for promiscuity. At the same time, he was very understanding with the woman as she had gotten HIV through blood transfusion.

The woman at some point stepped in and said. “I want to make something clear. I am equally responsible for having HIV as anyone else in the world. Don’t get into unethical blame games. Don’t be this kind of a person. There are families and children watching.” And I was watching.

This post is for the women who open our eyes. Thank you.

The following stories came to me anonymously through a form. Do you have a story to share? Do it today and I will share it this week.

“I was diagnosed at the age of 17 after I went to take an anonymous test at the hospital furthest from my hometown.

It was after I learned that my then-boyfriend and pimp was positive. And so were many of his so-called “friends” I had to sleep with.

It was on a Friday, they gave you an identification number and you had to call back to get the results. It was a really long weekend. When I called, they asked me to come back in, so I knew what was up. You could tell the doctor had not much of an idea on how to deal with the situation. He basically blamed the situation on me, telling me I was too young to live such a lifestyle. I only sought treatment two years later after I was able to change my living situation. Luckily I got a good doctor after I got in contact with the local queer sexual health organization. They were a big help! Due to a mutated virus, I’m not completely undetectable, but I have a very low viral load and I’m doing well.

Living with HIV is mostly normal, just like any other person. Sure you have to keep up with your doctor’s appointments and take the meds, but I’m able to do everything, which is great. Now I enjoy having access to a good health system, it’s really a privilege knowing that health assurance in my country is mandatory and pays for a large part of the meds.

Side effects of the medication can be challenging. Especially as I feel they show up mostly when I’m already stressed anyway. There is an uncertainty to living with a hard to treat viral mutation, sometimes I feel a bit stressed by that. I think living with HIV made me appreciate my health more. Through being relatively open about my status I was able to help start conversations in my local LGBTIQ+ community about sexual health. I feel a little bit of pride when younger members of my community ask me questions about how to stay safe and prevent HIV. I think it’s important to have an open dialogue about it.

I’m trans* and I have HIV, but one didn’t cause the other. They are two separate facts that are not related.

We are all individuals with our own stories, just because you know someone who feels one way about it, doesn’t mean I feel the same about it. Also, I’m most likely better educated on safer sex then you, (because if you were as well educated as I am, you wouldn’t have your stupid prejudice) and I’ll do absolutely everything in my power to keep my sexual partners safe. Seeing other openly HIV positive trans* people in the community who were living good lives, some even in healthy relationships was absolutely life and perspective-changing for me. It was great and helped me accept my status and move on. I’m very thankful that they paved the way.

Be kind when people open up about their status, it doesn’t matter how they got it and if it was their fault or not.”

– Sandro

“My journey with HIV started at a party when I was 23, young and having fun. On one of the nights out I was roofied, when I came to things already taken a turn for the worst. PREP at the time wasn’t that accessible and being ashamed of what happened I didn’t seek the help I needed. Shortly after that, I got diagnosed. The rest is history.

With medication these days, I can’t say that it has any negative impact on my life. In the earlier years of my diagnosis the medication combination was quite strong so it use to leave me very very dizzy and disorientating every night. But these days it has no impact. I’d say I live a healthier life since I was diagnosed, in my case it made me grow up and look out for myself.

I’d say the biggest frustration and challenge is the stigma that’s still in the community. People would sometimes flat out avoid you online, and coming out to a potential partner every time gets exhausting.

U=U get yourself educated, try your best to get on PREP. Don’t judge someone on their status, everyone has their own story and its not always easy. Get tested regularly other STI’s are a lot worse to deal with.”

– Anonymous

“I met someone at the gym when I was 23. We agreed to hookup, and also agreed to use protection. At one point during the night, he pulled out the condom without my knowledge. He had learned that he is poz just the week we hooked up and he was depressed and feeling rebellious. Two months later, I got myself tested and learned that I am positive as well. He admitted to it when I confronted him. This was the saddest and scariest period of my life. I went through depression. I thought my life is ending and I am gonna die.

The stigma and fear, more than the virus, is the hardest thing to manage. Five years after diagnosis, I have been living a healthy, thriving life. Made a lot of progress in my career and been fit and productive member of the society.

The rejection because of a misunderstanding of the status is just heartbreaking. Its quite common to meet guys that will tell you your great, inside and out but will reject you once they know your status – even though you’ve been undetectable for so long and you’re healthy.

Undetectable means untransmittable. This is not common knowledge. Let alone an acceptable one. Rejection because of status is common and made the disclosure harder not only in the straight members of the society but also in the gay community. When you’re poz, your status was often equated to being promiscuous which is a false equivalency.

Be proactive in knowing about the virus. Undetectable=Untrasmisttable. For the people living with HIV, the stigma is harder to manage than the virus itself. People with HIV are still healthy, productive members of society.”

– Anonymous

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