The HIV long-term survival journey is one where it is easy to get lost along the way. Low motivation, low self-esteem, social isolation, lethargy, and a victim mentality can lead to feelings of worthlessness, seeing no value in your own existence, and survivor guilt…all my friends have died so why am I still here! It can be overwhelming.

We have already spent 30+ years of our lives popping lifesaving pills, thousands of pills…and still with no end in sight. Pretty well every organ in our bodies has been subjected to incredible stress. Our minds have been tested beyond belief. We have been so low that we thought there was no coming back. Lipodystrophy and lipoatrophy have ravaged and aged us early, made us unrecognisable, made us feel ashamed of our own bodies, reticent to strip in front of strangers, in front of even lovers.

We have lived without immune systems, a state of inherent danger, not knowing what was going to attack you next, a world where even a cold or the flu could be deadly. We have been eroded by strange diseases, live right now with their devastating consequences. Now we live in a world where younger generations don’t understand us, don’t understand why we carry rage, why we roll our eyes at recent seroconversions, who carry on as though death was lurking around the corner. We have met death, witnessed its cruelty. You have nothing to fear!

Yet…we are here! Present! Sentient! We carry a world of knowledge that no one seems to want to know about.

So what do we do, wandering in this alien landscape? Do we bend, fold and cower…or do we BLOOM! This world is trying to put us down, humble us when we have already been humbled. But there is one thing this world doesn’t know…we are, and always have been, fighters.

We stand tall, collect our strength and take the next step! Then we stand back and roar at it “You are not going to win!”

Our world is not what it was! Having already been deconstructed, the only choice left is…reconstruction. So we stop! Re-evaluate! Pry around our fragile edges, gouge out the positives! Rip our lives to pieces, then sew it back together again into a fabric of renewal. We re-educate, for our past is not our present!

We reconnect, seek out those from our past who valued us for who we are…and take steps to make new acquaintances, find those who bring joy, laughter and value into our lives. We feed our bodies, this indestructible machine, with goodness, purity, health. We strip ourselves naked, stand proudly in the light, and rebuild our broken frames.

We glare at those who put us down, and yell “Listen here!…if you want to learn, come to me…otherwise, good luck with your ignorance!”

We reconnect with life! Everything is right there in front of us…you just need the hunger to demand loudly from life, and bellow “make me whole again!” Don’t give it choices!

Never accept no as the answer! Take it…mould it…your new, renewed life waits!

Don’t waste the opportunity! Long term survivor is not three dirty words! It is empowerment!

Having survived, you rise up…proud…enduring…and step confidently into the new.

The survivor’s mantra: I am here! I’m not going away!

Aboriginal and Torres Strait Islander Support
housing support for people living with HIV
Ageing Support
Treatments and Managing your HIV