I’m still here: living with HIV since 1984

Peter Schlosser
Peter Schlosser has been living with HIV since 1984. Photo: Positive Life NSW

Peter Schlosser has been defying expectations ever since he was first diagnosed with HIV in 1984. He told QNews about his experience.

My name is Peter Schlosser, and I’ve been living with HIV for nearly 40 years.

It’d be no surprise to tell you that I’m now 60. What may be surprising is today over 50 percent of the 10,000 people living with HIV in NSW are 50 years and over.

I was first diagnosed in late 1984 aged 21 when I was kindly told by my GP that I’d not have a 25th birthday. I’m still here.

Six years later in 1990, after a diagnosis of Hodgkin’s Lymphoma, I was given two weeks to live. I’m still here.

In early 1994, my partner of 10 years died of AIDS just after Christmas.

In early 1995, I was diagnosed with five AIDS defining illnesses. Family and friends were told that I could go at any time. I’m still here.

Later in 1995 I had a Grand Mal epileptic fit due to scarring on my brain from one of the AIDS-defining infections, and I also started a toxic antiretroviral treatment.

Two years to live was the expectation. Regardless of the damage from chemo and HIV meds, it saved my life. I’m still here.

Since 1997, with the newer and improved treatments with less side effects, my huge pill burden has declined, and I was expecting everything to return to normal. For a time it seemed that it was …till it wasn’t.

In 2003, aged 40, I had a sudden progression of osteo-arthritis. I needed a double knee replacement which was denied on the grounds that I was too young. After living with this progressive disability for 10 years, pain has become my companion. I’m still here.

In 2011 after some frightening cognitive issues, I was diagnosed with mild HIV-related neurocognitive dysfunction. I’m still here, just a little more confused.

In 2012 my gallbladder was removed. Most of me is still here.

In 2013 I had my knee replacement surgery, 50 was no longer too young. The pain relief was amazing. Even less of me is still here.

In 2015, I was invited to participate in an anal cancer prevention study. My first biopsy revealed very early anal cancer. After surgery, I’m still here.

In December 2019, I began chemotherapy for Hodgkin’s Lymphoma for the third time. My new goal is five years of remission. My guess is that I’ll still be here.

What I’d like you to hear today, is that’s not the end of my story, it’s not the end of our story.

Living with HIV is not just about treatments, it’s about quality of life. It’s about social connectedness, belonging, visibility, inclusion, being heard and acknowledged. Nothing about us without us. Please don’t leave us behind! Please don’t forget us! We are still here.

-Positive Life NSW is the representative body for all people living with HIV in NSW. To find out more go to www.positivelife.org.au

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