In 2003, Daenerys’ ex-partner – whose revelation first led to her having herself tested – contacted her again. He no longer had Hep. Just like that. He was, it turns out, one of the fortunate few who – for whatever reason – simply shrug off the disease.
No such luck for Daenerys, who had to soldier on.
“I sidelined it my mind. I’m good at ignoring things, and that’s what I did with this. I didn’t want to know how far it had travelled because I was already doing all I could – short of taking interferon.
Sufferers of Hep C are advised to take precautions for the safety of others. Did you comply in that way?
“I did. I kept a big box of about twenty-odd toothbrushes. And razors. All for the use of guests. I even went the extra mile and purchased fancy ones, just so people might be more inclined to use them.
“Once, I had a girlfriend down from Sydney. I remember her calling out from the bathroom – what are you? An hotel?”
What about forms? The kind on which you’re asked to declare infectious diseases?
“I let my dentist know. That’s fair, I think, because there’s a reasonable expectation of blood. In most cases I use my judgement. Beauty therapists, for instance. No way will I believe that performing a wax job will put the practitioner at risk. It would have to be a bizarre set of circumstances, wouldn’t it? To put a depilator in danger of infection?”
I’m no metrosexual, Daenerys…. I’ll take your word on that.
By 2007, Daenerys had worked her life back to something of an even keel. She moved back to Melbourne and took a management-level job which she still holds.
“But I continued to track developments. I spent hours and hours on the internet. There were some good, very progressive sites in the UK – not so much in the US, of course. And the Hepatitis Victoria site improved considerably around that time. Above all, I tended to read a lot of personal testimonials, blogs and such.
“I kept up to date on everything Hep C related – except, of course, the details of my own condition.”
So were you experiencing symptoms by this time?
“A few. My liver seemed a little sensitive. It worried me, but I didn’t want to push my fingers up under my ribs and find out for sure. I knew that I’d brood on it. Imagine it was cancer. That I was about to die…
“And this was around the time when people were beginning to die…
“Over the last ten years, fatigue became an overriding issue. I just couldn’t stay on my game without an unusually large amount of sleep. I used to wonder if it was a natural consequence of ageing. Perhaps ‘hope’ would be a better word, because underneath I was pretty sure it was related to my Hep.
“I concentrated on the importance of managing myself properly as a resource. Many people with many different needs rely on me at work – and to be effective I simply have to set aside time to recharge, to replenish.
“So I’m very lucky my job is flexible. I can work late. I can work from home. I can structure my working life around my condition. No way would I have been able to manage a 9-5er for ten years without that latitude.
“I like to think of myself as an ambivert. I work hard in a job that involves a great deal of personal interaction, but I simply must have my own time also. Time to sleep…
“I must say I’ve slept an awful lot over the last decade. I evolved into a sort of self-imposed invalid. It was work, then sleep. Work. Sleep. On the weekends, I’d have yoga class, then I’d go home and sleep. I never allowed my friends to witness my recuperative phase. It was my thing. My private world. But it was isolating too. When it came to going out and socialising – well, that was a very rare occurrence.”
Have you ever considered telling an employer that you have a chronic illness? Even that you have Hep C?
“I’ve thought about it. But, no.
“It’s not necessary for my boss to know that. It’s a private thing. And somehow structuring my condition, my disease, into my more public life is also a way of admitting its reality to myself. And that was something I was never quite prepared to do.”
In 2010, Daenerys’ brother was also diagnosed with Hep C.
“He’s a muso-slash-tradie. He made made no lifestyle modifications at all, kept drinking every day, and went straight into the needles and pills (interferon) treatment. It turned out his liver was in reasonably good condition, so I took some solace from that. I figured we might have be from good stock.”
And the treatment? Did it work?
“It did. Even at 50, he was a good responder.”
Did that make you wonder if might be worth doing it? Despite the side-effects?
Does he know you’ve been diagnosed?
No. As I’ve said, apart from health professionals, I’ve never told anyone. And aside from that, he’s my baby brother and he’s sensitive. I didn’t want to burden him. Particularly at a time when I was freaking myself out about having liver cancer.
Have you ever been aware of any kind of stigma associated with your condition? Whether it be a product of your own head, or clear and present in the real?
A thoughtful pause.
“Probably both …
“I have a group of girlfriends who I’m very close with. I imagined myself telling them, and I could see them getting paranoid about the food we share at lunch. Things like that. I wasn’t sure they’d react like that – I just decided it was an unnecessary complication.
“I mentioned that I was accepting of my own lifestyle choices, I think that gave me a certain strength… but I did get a sense, through the media and such, that people with Hep C were being painted as a sort of underclass. Naturally, I didn’t want to be seen like that.
“I knew I had it, nothing more. I was very good at repressing it, denying it within my own mind – but sometimes it would bubble up and I would feel a little dirty. There is this thing in me. A dirty thing. And still an unknown quantity …
“Sometimes it would just hit me… Why am I so tired? Oh, that’s right! I’ve got Hep C… I’ve polluted myself through my own choices ….Over the years, it has been been a predominant, life-changing thing, always there, rooted in my psyche.
“I’ve been reading recently about a concept called Post Traumatic Growth Syndrome. The idea is that you flip a traumatic experience into an opportunity for growth. I think I’ve made some really positive lifestyle choices using this as a philosophy.
“For example, I sometimes remind myself that if I hadn’t contracted Hep C, maybe I’d still be in some kind of unhealthy relationship with that alcoholic poet guy I’d been with when I first found out.
“Also, I feel that it’s somehow made me more accepting of other people, sensitive to them.
“Because I tend not to go out much now, I find myself feeling a bit standoffish and aloof, separate from the rest of humanity. I tend to observe rather than participate … I look at other people and wonder what they’re all about … But then don’t we all …
And you think the virus has something to do with your feelings of separation?
“It’s definitely had a large part to play.”
And you feel you’re somehow polluted?
“I think so, yes. I think my particular way of looking at the people around me has been an outward manifestation of my internal struggle. But it’s part of my nature too …
“Also, I’ve never felt I’ve been in a position to be in an intimate relationship with anyone. I told my doctor this and he gave me a massive pep talk. Basically told me I was talking crap, creating hurdles for myself – on top of the fact that the disease isn’t even sexually transmissible.”
“You know, there were many times I could have collapsed into a heap. An example is when my son died. But something always compelled me to keep going. And if I was going to keep going, then I should make a real go of it.
“If a job’s worth doing, it’s worth doing well, as they say.
The Golden Phaeton