There are many reasons why people living with Hep C make a decision to keep their condition to themselves. Sometimes it’s to avoid the stigma that can result by openly interfacing with the world as a Hep C positive person. Sometimes it helps in avoiding brute reality.
I spoke with one of these secretive types recently: Daenerys X, a woman of 52 who was diagnosed with HCV in 2001 (though she has likely been infected for considerably longer). She is currently several weeks into an eight week course of Harvoni.
“My ex-boyfriend learnt he had Hep C when he had some general tests prior to entering a new relationship.
“We were still good friends, living in the same house. I remember we were sitting on a bench somewhere in Newtown, when he let me know I should be tested. I was very vague on Hep C at the time. I was aware it was a blood-borne thing, but little else.
“Not long after that, my own test came back positive.”
Through the Eighties and early Nineties, Daenerys was a recreational user of both opiates and amphetamines. She was lucky enough to avoid getting a habit, but these were times when the phrase ‘clean injecting practices’ would have drawn blank stares. She recalled how, with a group of girlfriends, she would – once or twice a week – buy her drugs pre-mixed in used fits.
“I preferred to inject them. I liked the economy of scale. If I was going to consume chemicals, I figured I may as well get the most out of them.
“This was regional Victoria. I was particularly close with a certain male nurse. He was the person who taught me to inject myself, and he had some nice contacts. Every so often we’d go on a journey to one of the big towns and buy in bulk.
“At that time, I used to spend a lot of time with gay men, sitting around on chaise lounges, discussing antiques. I became very aware of AIDS as a result. Friends of mine died, a relative too, and for a time I was very involved in AIDS advocacy. I was tested of course …”
For Hep C too?
“No. It simply wasn’t on the radar at the time. But having shared injecting equipment with gay men, at that time, I was very lucky not to have contracted HIV. Whenever I’d enter a new relationship, I’d have a new set of tests – but never for Hep C.
“My substance use tended to revolve around my relationships with friends and partners – and I certainly had my share of tumultuous drug-fuelled romances. Obviously, that was when I used the most. But there were more conservative ones too. I even married once. And had a child…”
What became of him?
He committed suicide in 2005. At the age of sixteen.
To the point when you were diagnosed with HCV had you experienced any symptoms?
“None. At least none that I recognised.”
How did it affect you, finding out?
“It scared me badly. I’d been hearing of friends and colleagues who were being diagnosed – but I had no idea what it meant for me. It was devastating.
“I was also seeing someone at the time – and he was very much against hard drugs. A big drinker too, and I took on some of that. He was a muso and a poet, living in Newtown, and drinking really was a big part of that social scene.
“I’d thought I was in love… but I just couldn’t tell him about my results, particularly given his attitudes. So I began to wind back the relationship instead – just as I wound back on the drinking.”
An extra part of the challenge for Hep C patients is that humanity’s key social drug, alcohol, happens to be so damaging for our livers. Addressing one’s health often means a self-imposed isolation from (and at) almost every kind of social event we’re likely to attend. Of course, there are many who can adapt and still enjoy themselves, but I think there are at least as many who would rather not attend than attend and be unable to drink.
“From that point on, I went into full self-preservation mode. It was frightening enough to shift everything for me. I educated myself about the disease online and came to understood the impact it could be having on my liver. I set about making massive lifestyle changes.
“I stopped drinking, moved back home (regional Victoria) and found a job.
But there were further challenges to come.
“Around the same time, I was diagnosed with anaemia, which made life significantly harder. I could barely walk; I felt like a puppet – but I took it in hand, started taking B12, managing my condition …
“But I continued to worry. I lay awake at night weaving paranoid scenarios for my liver and kidneys, wondering when exactly they were going to implode …
“What made it worse was that I really didn’t know the state of my liver. I hadn’t had any LFTs (Liver Function Tests). The only way to check for scarring was with a biopsy, and I wasn’t prepared to go through with that.”
Having a liver biopsy involves a wide-bore needle, guided by ultrasound imaging, which pierces the liver and collects a sample. It’s an outpatient procedure, but that doesn’t make it any less scary and painful. These days, usually, equivalent results are achieved non-invasively with a FibroScan machine.
“I’m rather ‘naturally’ driven. I’d rather suffer through a headache than take over-the-counter painkillers. I think, if I had cancer, I might even refuse chemotherapy.
“I really wonder if such extreme treatments are worth it. It seems to me that bombarding ones body with powerful poisons might we worse than the disease itself.”
It was no surprise then, that when her GP appraised Daenerys of the interferon-based treatment available at the time, she decided to pass.
“I researched it thoroughly and it terrified me. I took to managing Hep C via a more natural route – at least until a gentler treatment came along.
“I started taking herbs that are said to be beneficial for the liver: the milk thistle, dandelion, what have you. I took to juicing and eating raw foods. I stopped drinking coffee, then started drinking it again when I learned it wasn’t too bad after all…”
Around this point, the waiter delivered Daenerys a strong soy flat white.
(Incidentally, news outlets have carried a story regarding a study that suggests coffee (consumed at certain levels) may be protective against liver cancer (HCC))
“I also have a spiritual side, which has definitely helped me get through this thing. And through the aftermath of my son’s death. It folds neatly into yoga, which I practice quite diligently.
“Still, I do have a predilection for ‘extreme sports’. I still lash out now and again with alcohol and drugs, but I view it as catharsis – not as a negative.”
(As opposed to myself, a catholic boy. I tend to drown myself in guilt after such lashings-out.)
The Golden Phaeton