We experienced great loss and grief, but we also had some moments that were extraordinary.

We faced mortality at a younger age than most people, and this changed us. Many of us lost entire circles of friends, but the fact that we were all going through this together gave us strength.

Robert and Ross remember:

Robert: For a lot of us, who spent time with a friend at Seventeen South around the bed of someone who’s dying, it was an incredibly sacred and precious experience. We experienced great loss and grief, but we also had some moments that were extraordinary, where everything superficial disappears and you have an ambience of truth.

Ross: It’s only over the last eighteen months that I’ve been talking about grief and loss. I don’t think I’ve ever really moved on from it because it was a huge part of my life. People were wrenched out of our lives at a very young age. I was only in my thirties when all that happened.

Our grief is also about lost expectations

Grief and loss is not only about losing a partner or friend. We also lost opportunities and expectations. Some people made decisions, which they would not have made had they known they were going to live longer.

Nigel: I got to my late fifties and felt that HIV took away some of the best years of my life. We didn’t live our lives in the ways that we would have lived them and made the decisions that we would have done, had we known we were going to live for fifteen years rather than two. Between the ages of forty-two and sixty should have been the time when I was getting the best out of my life. I feel sometimes that’s been stolen from me.

Many of us got stuck in limbo and struggled to rebuild our lives.

Michael: I’m only just starting to clamber out of that scene. I was pensioned off in 1995 so it’s taken a decade to start being a “normal”, “average” citizen again. People still struggle with welfare dependence. We have missed the crux of rebuilding people’s lives. That’s what got lost and a lot of people are stuck in limbo. They’re stuck because they’ve got financial constraints. They’re stuck because their financial constraints bring a smaller world to them, and they’re most probably mixing in a smaller crowd that’s experiencing the same things.

Breaking the cycle might be easier if we talk to someone.

We’ve been through a lot, and the barriers to change can seem so great that it can feel impossible. Talking about your hopes can be a first step, and sometimes it helps to talk to someone apart from your partner, family, or friends. Being able to bounce ideas and thoughts off someone who’s been through the same situation can help you improve how you feel about yourself and open up new options and choices in your life.

Thinking about change can be exciting, and daunting. The stories in this booklet give us some insight into how people have made changes in their lives. Some of these insights may be challenging for people less used to thinking about life in these ways. So don’t feel you’ve missed something if you aren’t getting it straight away.

There can be a lot to digest in one sitting. You might consider reading other sections at a time when they seem more relevant.

• Change happens when you are ready.