Robert’s journey: taking action

Robert is 43 years old, a journalist, founder and editor of a HIV community magazine. He was diagnosed with HIV eleven years ago after being tested at a sexual health clinic, but believes he contracted the disease two years earlier. Robert says the disruptive nature of a long-term relationship break-up contributed to a short period of time where he put himself at an increased risk of contracting HIV.

Although Robert was already involved in the HIV community before diagnosis, working as a treatment advisor for a peer support organisation, it still took him time to acknowledge he may have acquired HIV and get tested.

“I knew there were treatments and that HIV could be managed but this didn’t stop my denial and fear. I had been feeling unwell on and off for a couple of years and I’d been to my GP a few times with symptoms suggestive of HIV. It took time to reach the point where I needed to know whether I was living with HIV or not.”

After finally being tested, Robert says being diagnosed as HIV positive was in many ways a relief.  

“Having the diagnosis confirmed meant I could start taking proactive steps to manage my health. I almost felt silly I’d waited so long to get tested, but it did take some time to come to terms with the diagnosis.”

A change in direction…

Since commencing treatment eleven years ago, Robert’s viral load has remained at an undetectable level. Although he has developed low bone mineral density and experienced subsequent bone pain as a consequence of living with HIV, this is well-managed with treatment. Robert aims to live a healthy lifestyle and hopes to be ‘fit not frail’ when he thinks about his long-term health.

“Looking forward I’d like to continue working in the HIV community, perhaps in peer education at an international level. It’s exciting to think of all the things I hope to still achieve, it’s important people know HIV is not a barrier.”

Robert would also like to see an integrated model of care become standard practice where a centre of excellence is established. He believes it’s incredibly important that HIV management goes beyond an individual achieving an undetectable viral load and considers overall health, especially as people grow older.

Robert’s top recommendations to managing long-term HIV health:

  1. Value and prioritise both your clinical care and peer support opportunities – having contact with others who are HIV positive is a great comfort and source of friendship for many people. It keeps you connected, ensures you are up-to-date with the latest information and gives you the opportunity to learn from others’ experiences
  2. Find the right healthcare team – strong, trustworthy relationships can’t be underestimated. This will give you confidence in the management of your health and means you can openly discuss any obstacles that may arise during your long-term health journey
  3. Be the guardian of your own care – be proactive in your HIV management and continually discuss your overall health with your healthcare team e.g. cholesterol, bone density, mental health, treatment adherence etc. It’s also important to do your own research to make sure you have as much information as possible – there are lots of good community organisations to help with this