Glenn, age 50 / Newcastle, Australia


I think it’s harder now to live up to the expectation that you’re well.  People think that HIV has been finished. That the treatments are great and everyone’s fantastic. Because “the drugs are working so well now.” “We’ve solved the issues.” “There’s no more side effects.” “Yeah, it’s all done.” Um, no it’s not. And I think we put unnecessary expectations on people to be well. It’s almost like blaming the victim.

I work full-time.  I challenged myself to go back to that after I’d been told by all my doctors that I was really, really well, or that I should be well.  And again, it’s that “trusting the professional” rather than the personal. It’s challenging not to be well, when the story is that, you know, we live in a Western society that has good medication, has good healthcare and we should be okay.  It doesn’t always work.

I’m also afraid of, I think, life in general, you know?  I’ve got to face what I thought I wouldn’t have to: old age. I thought I was gonna have to not face watching other people die, I thought I’d go first, which is really– after seeing so many people die?  I thought “Yay, it’s my turn.  I can stop feeling that.”  No.  It’s back.

Grief is every day.  It’s a permanent friend.  I try not to dwell on it.