Lisa Tomney, Clinical Services Manager at the WA AIDS Council interviews John about living with HIV and getting older.
Hi John, a big welcome to you and thanks kindly for making yourself available for this interview. Firstly John, I would like to acknowledge that as at 1st April this year, you have been living with HIV for 30 years. Can you share with me a sense of your lived experience since being diagnosed in 1985?
The first two years were the hardest, mainly because a) the fear and b) the press. They were stigmatizing and causing people fear. I had a friend in hospital who had his food put at the door. They wouldn’t bring it into room, so there was all that sort of fear going on. As well as the personal fear that I had to face my own mortality. I am going to die, as they gave you two years to live then. Gradually it became that you were actually suffering more from the side effects of the medication trials that were being done in the early days, as I have never had any symptoms from the virus.
So that part was hard but then it became like any other chronic disease. We became more confident in what we could do: I thought I would undertake something that takes years. I undertook university studies and committed to something that took three, in fact, four years altogether. That was a thing to actually commit to something – before that, no you didn’t dare commit, just in case, but now everything’s fine. And things are going to be not a problem. I can look forward to death in an ordinary way. That’s a validation of the work being done at places like the Albion St. clinic in Sydney, the clinic in Melbourne and at the WA AIDS Council in WA.
At the age of 70 John, and at a time when thoughts sometimes wander to care and support in your golden years, what would your hopes, dreams and fears be about considering accessing some level of aged care, whether it be community or residential?
Hopes and dreams: hey, a large room with a great view, high ceilings and room for my desk and books. That I’ll still have privacy of thought as well as of physical space. That I’ll still have some say in the running of my life. That people will converse with me about things other than my health, and that people won’t patronise us, and I say us because I am not the only person that’s going to be facing this problem, and the number is going to increase as we go on. That people will consider that I am who they are dealing with, not the disease, and people will be aware of our mental and emotional needs as well as physical ones.
In terms of potential greater support needed for personal care, what would you want carers to be aware of?
That I’m not infectious, that you need an exchange of bodily fluids in order to be considered infectious, or for a person to be infected and (grin) I’m afraid I’m past that: there will be no swapping of bodily fluids. For me personally, because everything is going very well in my cd4 count, and my viral load is down to nil, but there are those people who go into aged care who have compromised immune systems and they’re more likely to catch something from the carer than the carer is from them.
John, can you tell me a little about any specific health or other issues you may be facing at the moment?
(Laughs) A few: gout, emphysema, stenosis of the spine and a few others but the biggest thing to notice is that they are all to do with ageing, absolutely nothing to do with HIV. I’m going to end up dying from one of those, not from AIDS or an AIDS related illness. I won’t be going that way, I won’t be needing a lead coffin (laughs).
What do you hope carers and aged care providers will learn from taking part in the training?
That they become confident with dealing with us, because I’m not the only person and there is going to be more people living with HIV that need similar services. That they are confident in what they’re doing and then we can be confident with them. There is also another sense of the word confident, which is when I confident something in you. So if we go to aged care I hope we can confide in them that we have the virus and not have them gossip or even tell their relations, it is our business and I choose who I tell.
The WA AIDS Council provides training for aged care facilities, in appropriate and respectful care of people living with HIV. For more information, please click here.