Last year I had the pleasure of attending the International AIDS Symposium in Melbourne. The stand out take-home message was about the clear divide between access to testing, treatment and care, and the disparity of resources between developing and developed countries. The one common denominator was stigma and discrimination. How this plays out is often more violent in developing countries.
In these countries, it is women and children who wear the brunt, and where heterosexual, same sex attracted and trans communities discriminate more harshly toward their own. While immersed in this broader context of the world stage, I focused my attention and interests more towards what is happening here in Australia and what the future might be dishing up to those of us who are living longer with HIV.
The evidence is very compelling on two fronts. Both knowing your HIV status and commencing treatments as soon as practical after testing positive, are now the main pillars of the message. These are very broad brush strokes.
I am of the firm belief that social care and support cannot be underestimated and must remain as a cornerstone of these approaches. Since starting with Positive Life NSW in late December 2014, as I settle in as the Treatments Officer, there is a theme within the conversations that I am having with counterparts within the sector. There is a constant thread of issues emerging around mental health and neurological (brain) diagnosis associated with HIV. How far reaching this problem is we are not exactly sure. The reason for this is many fold, in that a lot of these problems being experienced are emerging in populations where mental health, like depression, are present even without HIV and within an ageing population where you would expect to see these problems emerging.
What we do know is the sooner you have these problems addressed, the better the outcome in the long term. The triggers that indicate an emerging problem can be quite subtle. They can also be part of what we all experience from day to day. We misplace our keys and forget the occasional appointment. Since the advent of the mobile phone I barely remember my own phone number. Problems like difficulty remembering things, losing the train of thought, fatigue and mood swings can be possible indicators something is wrong. I see people getting frustrated and acting out in general.
So at what point should we be concerned? When these things start affecting day-to-day functioning, relationships with people, either at work or at home seem out of control or volatile, and people are noticing you are out of character. Financial difficulties from over-spending or being put on a performance agreement at work, especially if you have been achieving targets until recently, are indications something might be changing neurologically. When changes like this manifest in personality and behaviour, people can quickly become alienated from access to care and services. Too often, I am hearing that people are being turned away from the services that they need to support them.
People often try to rationalise this and attempt to work it out by themselves. Discussions with friends can be helpful. However, this well-meaning advice may lack the solutions that experienced professional advice can offer. A mental health or neurological condition is complex so it is very important that you speak to your doctor or an experienced healthcare professional. Positive Life NSW is currently working on developing strategies which address these complex HIV and mental health/ neurological conditions.
If you are experiencing difficulties of this nature, we’d suggest you discuss these concerns with your GP or treating doctor. We would be happy to talk with you about what’s going on and help work out ways forward with you, if you need further assistance. There are also links to other organisations that could be useful for you to contact.
ADAHPS – a multidisciplinary team including psychologists and case managers for residents of NSW who have HIV related cognitive impairment and complex needs
Bobby Goldsmith Foundation (BGF) – providing financial and practical assistance support to people living disadvantaged by HIV in NSW
HIV/AIDS Legal Centre Inc. (HALC) – a not-for-profit, specialist community legal centre, providing specialist support to deal with the particular issues that HIV and the law create.
Published for Talkabout Online #183 – February 2015