I always want to take advantage of the immense natural beauty and the open spaces that we have.

My family moved to Canberra 17 years ago with my husband’s work. Although my extended family had lived in Canberra in the 1950s—my dad was a political journalist here then.

These days I’m a mother of two adult children, married, and I do a number of volunteer activities having left paid work two and half years ago.

I have systemic lupus, arthritis and a number of injuries that have changed the way I live my life and the way I have to manage my health. I do think of myself as a reasonably healthy person, but I’m taking a lot of tax payer dollars to keep upright and mobile!

At the moment maintaining my health is relatively easy, but that has come about because I’m a reasonably well-educated person and know a little bit about services. For example, I’ve known that when I get answers I don’t like, that I don’t have to accept them. Many women with lupus tend to be diagnosed in our middle years, after having the illness initially dismissed as menopause. I’ve had both, and hot flushes do not last for five days at a time. Lupus mostly affects women—so if a feminist is going to get a disease I think it’s ironic that you end up with a women’s disease!

For all the health problems that I’ve had over the last ten years, I would say the redeeming feature is that I’m a mouthy, well-educated, middle-class, white lady who when she can get her act together speaks English in coherent sentences.

It was difficult to get to the point of feeling like my health is reasonably well managed though; that I’ve got a good team of specialists and I can ask for other referrals. I’m now on a part Disability Support Pension, so the Health Care Card really helps, but even so, the way our health care services are structured makes it incredibly difficult to access some services as a public patient. Medicare is supposed to be universal coverage—but we don’t have universal health cover. I face out-of-pocket expenses that I am able to manage, but when I look around waiting rooms I know that treatment is a bigger decision for other people.

For me being a woman means that I got to be a mother. I got to grow some babies and give birth. But I also think I have more choices as a woman; I think it is easier for a woman to take on gender roles that are seen as more traditional male roles, than it is for men to take on traditional female roles. I get to do a range of things like knitting, gardening, cooking, sport, as well as fulfil a range of roles in paid work. I’d had a couple of different career paths in Canberra that I don’t think I would have had anywhere else. It just would have been nice if I was paid as much as some of my male colleagues.

The difficult part of being a woman in Canberra became obvious once my health started to change. One of the things that I found hard was that because we are mostly well-educated and affluent, there’s an expectation that you want to be superwoman. There is a lot of pressure to succeed in regards to income and status.

That was all very nice while I could play that game, but I can’t necessarily play that game anymore. I joke about it with people who are talking about retiring and wanting to change their lives. I say, “You’ve got to think about what you’re going to say when people ask what you do.” Because I have been at business meetings where people go, “what do you do?” and now that I can’t say I’m a team leader, or a software tester, I can see them glaze over in about 30 seconds.

At the moment the hardest thing is defining what I am, what I want to be doing and whether there are other things that I’ll find more challenging but also manageable.

My perfect day would definitely involve my three favourite things: swimming, chocolate and red wine! I think I’d start with a morning swim. Take my knitting and go to a nice café for lunch. Go home, play with the dogs and cook and enjoy the view. I have a beautiful view of the Brindabellas where I live.


Image created by Josey Carnovale