IMPACT ON LIFE

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In 2011, Positive Life SA held a series of “Big Issues Forums”.  These Forums were an opportunity for HIV community members to discuss the issues that are impacting on their lives.  The “big issues” that got the greatest attention at the forums were: 

This page includes links to comments made by HIV positive participants, in their own words. 

Overview of the Impact of HIV

But first, a general overview of these issues and more … 

A fabulous collection of 5 Positive Stories from people living with HIV in South Australia were launched on 13 November 2011.  They are available online and as a DVD.  As the DVD cover says, these stories … share rare and profound insights into living positively, regardless of your health status!


Me, Mum & Dad (3:30 mins – Greg Kelly): Coming out as Positive was the hardest thing I’ve ever had to do … but my parents continued to love me and have been by my side throughout sickness, depressions and over 80 funerals.  This story is dedicated to my exceptional Mum and Dad.

The Never Ever Ending Story (3:30 mins – Kath Leane):  While growing up the Catholic Church was my moral compass and, later, the Woodstock era was like a magnet for me.  It doesn’t matter how or when I became HIV positive … because I’m still the same person.

Bloody Brenda! (5:00 mins – Brian North):  This is my story about living with HIV and how my alter ego, Brenda, helped me along the way …

My Secret Story (3:30 mins – Anon):  This is a story about coming to terms with the guilt and shame of becoming HIV positive … and my hope s for future generations of young religious gay people.

Greg’s Sermon (3:30 mins – Greg Kelly):  This is my dance floor tribute to living through the HIV wars … and a call to love and respect yourself and those you journey with!

You can access the stories at Rainbow Family Tree.

And … there’s a great story, called Thinking Positive on women’s experience of living with HIV.  Originally shown on Sixty Minutes on 31 October 2011, the link to this 14 minute story and a transcript of the text are at: http://sixtyminutes.ninemsn.com.au/article.aspx?id=8366724

Having a Life: HIV positive people speak about their lives, loves and hopes for the future is a booklet produced several years ago.  We know it’s still very relevant, because the issues it covers are very similar to those raised at the Positive Life SA forums.  It also includes useful stories and ideas about looking after your health, accessing support, grief and loss and sex.   This is a very readable booklet.  It mostly contains the real life stories of 16 different HIV positive people. 

Having a Life

Having a Life was first published on 28 October 2003.

While the content of this resource was checked for accuracy at the time of publication, Positive Life SA recommends checking to determine whether the information is the most up-to-date available, especially when making decisions which may affect your health.

Having a Life: HIV positive people speak about their lives, loves and hopes for the future is most accessible in hardcopy.  Contact us to post you a copy. 

Or, if you really want to read it online, you can download it, chapter by chapter, from: http://napwa.org.au/resource/having-a-life

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Stigma & Discrimination are Alive and Well!

It is widely believed that discrimination against people with HIV is a thing of the past.  Sadly, discrimination and stigma are alive and well in South Australia, and continue to impact significantly on HIV positive people’s lives.  This explains why the majority of people living with HIV are not public about their HIV status. 

Many people living with HIV in South Australia continue to live with the scars of past experiences which have had a lasting impact on their lives.  Many have lost relationships, family, jobs and future employment opportunities as a result of past discrimination.  Some people’s access to health care has been reduced.  Some feel their reputation has been damaged.  Some continue to feel insecure or unsafe as a result of past experiences.

I’m a teacher.  In 1999, I got really depressed and sick and was off work for months.  I was talking to my Principal who told me not to come back because there were rumours in the school that I had AIDS.  I felt terrible.  I didn’t go back.  I don’t know why he said those things to me.  It doesn’t make any sense.   (Jonathon)

You know, five years back one of my HIV positive friends got really harassed by his neighbours.  They found out about his status and did stuff like empty his bins out all over the place.  They even filled his car petrol tank with water!  Really horrible. Why do people do that stuff?  (Aleska)

The following incidents occurred during 2011:

A group of us guys play golf every week - have been for years.  They don’t know I’m HIV.  Last week I picked up a shirt someone had left on the green.  It was a good one.  All the guys shouted to me to ‘drop it, drop it!’  They said ‘you can’t keep that it might have been from someone who’s got AIDS’.  Why do people say this shit?  (Simon)

My sister has stopped me seeing my nephews now that she knows I am HIV positive.  Her partner was hardly ever around.  I used to be like a second father to them.  Don’t know how she can do that to them. (Aidan)

My friend (Aarthi) works in telecommunications, is 21, and was recently diagnosed as HIV positive.  After doing all her research about HIV she decided to tell her line manager believing that this would be a safe thing to do.  The line manager told his wife who then told other staff during drinks at the pub after work.  Aarthi felt that everyone knew and were talking about her and so became very stressed and depressed and has taken lots of time off work.  She was due for a promotion, but has been told that the offer has been withdrawn because she probably couldn’t cope with the stress of being a manager!  Aarthi has gone from loving her work to hating it.  Why do people do this to other people?  (Vanna)

At school a 13 year old girl told her four friends that she was HIV.  Two of the girls must have told their parents because the next day they told her that they weren’t allowed to be her friend any more.  Why would parents say that?  (Jill)

Discrimination and stigma do not make any sense.  Discrimination against people on the basis of their HIV status is against the law.

Click here for more stories about HIV positive peoples’ experiences of stigma and discrimination in South Australia

Positive Life SA is constantly updating our Information Sheet: Discrimination, Advocacy & Disclosure.  This provides information about:

  • The legal rights and responsibilities of HIV positive people in South Australia
  • Confidentiality and privacy law
  • Discrimination law
  • The situation in other Australian states/territories
  • Information about advocacy and complaints bodies

Contact us to post or email you a copy of the most up-to-date version.

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The Financial Realities of HIV

Some HIV positive people, particularly those with a recent diagnosis, continue to maintain employment.  However the reality is that 40% of people living with HIV rely on a government benefit (often Disability Support Pensions) and many more are under-employed.  Even those who are working on reasonable salaries can experience financial stress due to the cost of medications (with a co-payment of $35.40 per PBS script as at 1 January 2012).   

Whilst wages have largely kept pace with CPI, it has become harder and harder to live on a low income.  People on low incomes spend a greater proportion of their income on essentials – food, rent, electricity, water, transport, etc.  Many of these costs have gone up faster than CPI over the past 10 years, and Centrelink benefits have not kept pace with this reality. 

I have just worked out that I spend 42% of my income on rent! (Ian)  

… the cost of staying warm in winter and cool in summer has grown exponentially over time.  I pay $65 a fortnight on electricity.  Running a car is not a luxury.  I need it to make the numerous doctors and specialist appointments each week and these costs rise and never fall.  I don’t use the car for unnecessary trips and tests are not always covered.  (Trevor)

And … HIV+ people have much higher expenses than the average population.  People living with HIV are spending up to an average of 30% of their income on medications.  A recent study found that 46% of HIV positive people are struggling to afford HIV medications.  In addition, most HIV positive people aged over 40 have another significant illness (eg diabetes, hepatitis C, osteoporosis, heart disease).  The study found that 60% of people with HIV are struggling to afford prescribed medications for their illnesses in addition to HIV.

I am currently on 33 tablets a day.  The cost of other treatments for opportunistic diseases has impacted on my finances to the extent that now I cannot afford all the other treatments required to stay well.  The times I stray from them I am hospitalised for extended periods.   (Stan)

It is not uncommon for Stan to need to purchase 11 scripts at a time – each at theconcessional co-payment rate of $5.80 per script.  It is hardly surprising that he reaches the concessional safety net in April each year.  Whilst Stan’s situation is worse than most, many people with HIV are forced to choose between health care and basic living expenses.

So … if you feel like life’s getting tougher, you’re not going crazy!  You share this experience with many other HIV positive people in Adelaide.

 Click here for more about the financial realities of living with HIV in South Australia in HIV positive people’s own words 

Positive Life SA is constantly updating our Information Sheet: The Financial Burden of HIV.  This provides:

  • More detailed information on cost of living pressures
  • Research evidence for our claims
  • Information about practical help (e.g. loans and funds) available in South Australia.

Contact us to post or email you a copy of the most up-to-date version.

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Everyday Practical Challenges (when you’re sick or ageing)

HIV positive participants in the Big Issues Forums were concerned about their difficulty getting practical help when needed.  For people with limited mobility or poor health, transport to medical appointments, and help with the practicalities of life, were a major concern.  Others expressed anxiety about getting help when they need it – particularly since there is some evidence that people with HIV age at a faster rate than people without HIV, they cannot access many of the practical services available to older people.

I live by myself.  I’m not sure what will happen when I can’t cope with house maintenance (clearing gutter, gardening, shopping and house cleaning).  I’ll have to move, ‘cos I don’t have public transport nearby.  (Bruce)

                         
Due to my health and looking after children, I’m having trouble keeping up with the jobs around the house.  RDNS tried to get HACC to help, but they said I’m not eligible.  My ex-wife helps … and I have to pay privately for services like home cleaning, lawn mowing and gardening.  (Earl)  

Click here for more stories about the practical challenges of HIV

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Ageing

HIV infection, coupled with the natural processes of ageing, creates added challenges for people living with HIV.  As Ahead of Time says: The impact of HIV on our bodies and on the immune system as we get older is greatly affected by ageing. HIV affects each of us differently. Some people progress to symptoms very quickly, while others live for 20-plus years without any signs of immune suppression or symptoms. Each of us ages differently as well. How well we age and how the ageing of our bodies’ impacts upon our health is unique to each of us.

Ahead of Time was first published on 10 April 2010.

While the content of this resource was checked for accuracy at the time of publication, Positive Life SA recommends checking to determine whether the information is the most up-to-date available, especially when making decisions which may affect your health.

Ahead of Time

This resource gives an overview of Growing older with HIV, Medical challenges of HIV, Managing social change and lists some of the support services available. It includes quotes from older people living with HIV.

Ahead of Time: A practical guide to growing older with HIV can be downloaded free of charge from http://napwa.org.au/resource/ahead-of-time-a-practical-guide-to-growing-older-with-hiv.  Or, contact us to post you a copy. 

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Access to Emotional Support and Mental Health Services

Positive Life SA is constantly updating our Information Sheet: Counselling and support services for HIV positive people  This provides:

  • A list of out-of-hours crisis support services
  • A list of non-crisis mental health support services
  • HIV/GLBTI-friendly free counselling services and private practitioners.

Contact us to post or email you a copy of the most up-to-date version.

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