Living positively: Neville’s story

HIV Australia | Vol. 11 No. 3 | October 2013

Aboriginal and Torres Strait Islander people are advised that this article of HIV Australia contains names of people who have passed away.

Howdy, my name is Neville Fazulla. Some of you will know me as Mona, Mony, Fuzzy or Olivia and my besties call me sis.

I have been asked to give an insight into living with multiple chronic conditions and HIV and the ups and downs of what my journey has been like thus far.

I have five chronic conditions: I have lived with diabetes for 32 years, HIV for 21 years, kikuchi¹ for nine years, cancer for four years and end stage renal disease for three-and-a-half years.

I believe that I manage all of these conditions effectively and have a number of strategies that I choose to practise that help me with my compliance and ongoing treatment.

I have been lucky to live by, and have also been employed in, a self-management program developed by Dr Kate Lorig of Stanford University in California, USA. I will discuss this in more detail, but first, here is a bit of a background about me.

Growing up

I am the fourth child of five in a mixed relationship marriage of both Aboriginal (Western Arrente and Yawarrawarrka) and Afghani descent. I am the first-born son, with three older sisters and a brother.

In 1970 we moved to a more industrialised town in South Australia (SA) and this is where I remember I first witnessed and experienced racism and discrimination.

Even though I knew I was different, it wasn’t until the early 80s that I realised fully that I was gay – a ‘homo’ or a ‘pansy’, as the local rednecks would say.

It was in the early 80s that I first heard of HIV, when it was still being called by the name GRID (gay-related immune deficiency), during a conversation with my mother after we had watched the local TV news.

I wondered why my mother spoke to me about this disease and, later in life, I realised that she was giving me the opportunity to discuss and come clean about my sexuality in a way only a mother can.

Moving out, coming out

Like many others, I chose to move away from my home town and state, so that I could live life as a gay man without any form of discrimination.

I moved to Sydney in the late 80s, during the middle of the rise in HIV infection and transmission in the gay community.

I met a beautiful man, fell in love and decided that I was comfortable with my life and lifestyle; I started to slowly ‘come out of the closet.’

Actually, I threw open the door and jumped out with all the glitz and glam – this was the first time in my life that I felt that I could be myself and not have to hide.

As a young man I was highly impressionable and believed that I was in the best ever part of the world a ‘Whole city full of men Gay Men,’ so without sounding too cliché, this was the birth of a whole new person.

Becoming positive, staying positive

When I first learned of my positive HIV diagnosis I was stunned and I continued to go about my everyday life in a state of numbness. At this time I was in a relationship with a very wonderful caring man and he provided me with terrific support.

I continued to work and questioned myself about how I was going to disclose to my family friends and work colleagues. I was more concerned at this point with ‘coming out’ to my boss.

For months I dealt with the constant thoughts of death and what I wanted to do for the rest of my life. One conclusive decision was to continue to work, as I felt that this would enable me to be able to stay connected with society and give me an outlet.

This article is to share and discuss some of the self-management practices I’ve used over nearly 21 twenty years of living with HIV – practices that enable me to maintain and a somewhat stringent treatment and health regime.

I have never been one to allow my HIV to rule my life. Like everyone who has been affected by this disease, I have my good and bad periods, and fortunately, I have had more good than bad.

I take a very positive and determined view of the maintenance and treatment that I undertake for my HIV management. And oh yes, I did take ‘treatment holidays’ in the early 90s, as I found the maintenance at the time very difficult to cope with.

I must state that this decision was not made lightly: I discussed my options of a treatment break with my treating doctor at the Albion Street Centre, Dr Derek Chan, and he was very forthcoming in listening to my reasons and providing me with different scenarios that could arise.

We compromised on a three-month treatment break, after which I would take up a new treatment regime: I have been compliant with this treatment since late 2004.

I’m not saying that taking a break from treatments is the best decision for everyone, but if you are considering this you should discuss it with your treating doctor and have open and honest discussion about the pros and cons.

Compliance with medications and treatments is a somewhat a daunting experience. Currently, I take up to 31 tablets a day for a number of conditions, most are for my renal failure.

I have found the models and enablers given in the Stanford program very effective and useful in addressing this issue.

I – like many of you – have suffered the grief that is accompanied with the loss of dear friends, mates and lovers, and I strongly believe that these losses are what strengthens my resolve to ensure that we continue to minimise the effects of HIV/ AIDS on people’s lives and livelihood.

Overcoming addiction

I am active member of the gay, positive and Aboriginal communities – this has provided me with many great opportunities to grow and develop. I have also had to deal with the demons associated with addiction.

Like many a young gay man, I enjoyed the party and powder era and often found myself experimenting with recreational drugs. I found my greatest addiction was to heroin and ice throughout the early 2000s.

As a number of you will remember, this was a very significant era in the gay party, clubbing and sex scene, and for many, these drugs were like a rite of passage to the ‘best party in the world’.

Throughout this period in my life, I believed that I was invincible and indestructible. Fortunately, I found out I was wrong and took measures to deal with stopping my addiction.

I realised the cost financially and the impact health wise, and that I was losing a lot of friends because of my selfish behaviour due to the addictive power of the drugs. I sought help from friends and then chose to go ‘cold turkey’ I have been clean from these drugs for six years.

I have also dealt with my marijuana, cigarette and alcohol reliance, and have ceased the use and consumption of these products.

Work life

I have worked and socialised in the HIV/sexual health arena for a period of 21 years. I have been a project officer, team leader, president, coordinator, board member, student, mentor, a peer and volunteer and, along with all of this, a person working and living with HIV.

I have a very strong work ethic and believe that this is one of the enablers in my life that has helped me to stay relatively healthy and sane in dealing with my HIV.

I continued to work until April last year, when I decided that I needed to cease work for a period of time while I dealt with the management and treatment of my renal disease, as I was finding it really hard to meet all my commitments in my work life and maintain a healthy model of treatment and lifestyle.

Some of the major barriers that I have faced are racism, discrimination and stigmatisation. I have dealt with the racism through two processes: cultural awareness and competency, so in addressing these I use a set of processes. They are:

• open discussion and communication – the ability to understand the other person’s thoughts and reasoning (this is a two-way process)
• recognition of difference: the ability to recognise and accept difference
• education and empowerment to address difference using skills like acceptance, recognition and acknowledgement.

With discrimination and stigmatisation I believe that the best tool is to work towards finding out people’s fears and provide ways to dispel these fears.

In most cases it’s just fear of the unknown. This is an ongoing process and requires patience and effective non-challenging communication practices.

Living with chronic disease and practising self-management

Living with a chronic condition is a very challenging and difficult thing at times; there are people who do quite well and others who find it all too overwhelming.

This could be for a number of reasons: anyone who deals with a chronic condition or illness understands and knows the feelings of anxiety, depression, grief and loss, fear of the unknown and ongoing peer and community stigma, and this can be especially compounded with HIV.

I am a strong advocate for self-management, as it gives me the knowledge and flexibility to maintain and strengthen my ability to have discussions – and I mean open and honest discussions! – with my health providers, be they doctors, nurses or allied health professionals.

There are a number of ways to address issues around self-management – here I am going to discuss the Stanford Model.

The Stanford model of self-management (the Chronic Disease Self-Management Program²) is a very useful tool for dealing with chronic condition management. It is a peer-based course, delivered over a six-week period, which enables the individual to challenge their personal involvement in their ongoing health care.

It provides a range of enablers and processes to address issues such as:

• understanding your health conditions and needs (i.e., understanding the differences between acute and chronic conditions)
• dealing with emotions
• working with and discussing your health care needs with your health providers
• developing future plans for health care
• relaxation methods
• communication practices
• food and nutrition
• depression and mental health needs
• medications and treatment decisions.

All of these techniques are used in a collaborative manner.

They involve open discussion (this could be with a buddy or your health professional) and effective feedback and problem solving.

I find that using these models in my everyday life – for more than just my health concerns – has really made my daily living a lot easier and a lot less stressful.

The above are just some suggestions to be used. To get more information, contact your local health provider in your region to find out if these programs exist in your local area.

Enablers in all forms are the best way to deal with multiple diseases/disorders and a very effective tool and strong communication skills are key to dealing with arising issues and problems.

There is a four step process that I routinely use:

• identify the issue
• express your feelings (use ‘I messages’)
• listen attentively (show respect for other people’s opinions/suggestions)
• clarify (ask questions if unsure).

The challenge of multiple comorbidities

Dealing with one or two chronic conditions can be daunting, but having to deal with five was a whole new challenge.

At first, my biggest issues were with medication compliance and time management. These two issues posed a new process of thought and decision making.

This is at a time that I was lucky enough to be employed in Country Health South Australia, working with Aboriginal and remote communities to deliver the peer-based Chronic Conditions Self- Management Program. This provided me with a whole new set of skills to share with the community and adopt into my own health maintenance as well.

My life has dealt me some blows – and I mean some real strong ones – but I think about what my beautiful mother used to always say: ‘If you’re knocked down, get up and keep going! You are the only person who can achieve what you want.’

Thanks Mum – I gather that this was about using positive thinking processes. I find I can achieve this by:

• writing down self-defeating thoughts
• processing them and changing them to rational and helpful thoughts about myself
• rehearsing the changes (i.e., stand in front of a mirror and give yourself positive reaffirmations)
• practising the changes (build them into your daily routine and health care communication and maintenance)
• being patient (like anything, it will take time to change your thought patterns and behaviour).

I suppose in a sense that is what has strengthened my resolve to continue to grow and not let any barriers stop me from achieving and having the life I want.

Creating your own self-management toolbox

Listed above are some of the process and tools that I use and adapt to suit my own health maintenance and self-management.

Each one of us is different and has individual needs and issues – do not lose sight of this and ensure that your own needs are met.

For your own purposes, you could consider developing a personal Self-Management Toolbox of your own. This could be a written down on piece of paper on the wall, or a list of things on your mobile phone or tablet.

Make sure the list is visible and you can refer to it at your convenience. You can put a range of achievable processes into your toolbox such as medication issues, using your mind, planning, working with your health professionals, healthy eating, and fatigue and pain management.

Put simply, a toolbox can be used for any decision making process in your life – don’t forget, they’re your tools!

If you are dealing with issues associated with access to treatments and ongoing care of your chronic condition maintenance please consider some of the processes I have shared, as well as making contact with your local health provider or community-based organisation.

In closing, don’t be afraid to ask questions. Do not presume that your doctor/health professional understands or knows what you are feeling or experiencing. Open discussion is the best medicine in this process.

Cheers,

Neville Fazulla, Community Member

References

1 Kikuchi is a form of cancer (named after the Japanese scientist who discovered the disease) that affects the Lymphatic system. It is a tropical disease that is very rare disease and is a tropical disease. There are less than ten known cases of Kikuchi in Australia.

2 http://patienteducation.stanford.edu/programs/cdsmp.html

Neville Fazulla is an Indigenous Australian with an extensive and varied career working with and representing Indigenous and gay communities.

Over 21 years he has held staff or Board positions at organisations including Aboriginal Health and Medical Research Council of New South Wales, the Aboriginal Health Council of South Australia, the AIDS Council of South Australia, Queensland AIDS Council, People Living with HIV/AIDS South Australia, National Association of People Living with HIV Australia, Australian Federation of AIDS Organisations and many others. He has also been a community representative and spokesperson on numerous steering committees and community networks around the country.