The yawning black pit opened beneath my feet and I tumbled, floundering and spinning, into a grim and alien landscape. I begged for meaning to flesh out the stark words of cirrhosis and cancer, but frosty indifference and cold recrimination was the reply. Chilled to the bone with fear, I cried out for assurance, for comfort, but found myself alone, abandoned in the deathly silent, barren world of hepatitis C diagnosis.
I was informed of my hep C status in May of 1999, shortly after being hospitalised with suspected appendicitis. The appendicitis turned out to be what is known as deferred pain and in my case, the pain was being deferred from my liver. At the time of hospitalisation, the only thing they could find wrong was a small ovarian cyst on my left ovary (duly removed) and elevated liver enzymes. I requested hep C testing and was declined - no, dismissed - by the ward doctor. "You'll have to go to the sexual disease clinic to test for something like that," he sniffed. Tapping my lab results on his clipboard for emphasis, he admonished me to quit drinking "so much" without even bothering to ask if I drank. He signed my discharge papers, turned his back with a sigh and walked away. To him, I was just another drunken divorcee.
Back in '99, the Manx Health Service didn't think sexual health was important enough to have its own clinic and so the GUM operated out of a little storage room off the outpatient waiting area. A few weeks after finding out about my liver enzymes, I found myself sitting in a cluttered, makeshift office trying to catch the eye of a stern, grey-haired doctor. She looked everywhere but at me as she read the verdict - positive for hepatitis C antibodies.
"You'll have to make an appointment with Dr. Dirkhead's* office to find out if that means anything."
"What do you mean - 'if it means anything'?"
"You'll have to ask Dr. Dirkhead. We don't deal with your type here." "My type?" Oh, that'll be the scared-shitless, newly diagnosed with hep C type. Gotcha!
Almost as an afterthought, she shoved a pamphlet in my direction and nodded towards the door saying, "Now if you don't mind, I have patients to see."
The next few weeks were a blurred nightmare. I read and re-read the doctor's pamphlet until I knew it by heart. The words cirrhosis and cancer preformed a danse macabre for an audience of one, over and over against the backdrop of my mind. Both words struck absolute terror into my heart; many relatives on my father's side died from cirrhosis and a high-school sweetheart's mother died of liver cancer. I knew neither one was a pleasant way to go. I couldn't find any information other than the brief pamphlet I was given at the clinic and it was as though hep C didn't exist. A search of the local bookshops and libraries drew a blank. I didn't have internet access and from what I can tell, there wasn't a whole lot of information to be had there in 1999 anyway.
In my fear and confusion, I turned to alcohol for a few weeks. I knew it couldn't be doing me any good but I had to do something to stop the pain and madness in my head - at least for a while. I took a week off work, drank myself into oblivion, and had my last drink for what turned out to be four years on Sunday, June 13th. It was the following Tuesday before I sobered up.
Sometime in either late June or early July, I had my first appointment with Dr. Dirkhead. He had the results of blood tests that were taken a few weeks previously and the news wasn't good. I did indeed have a chronic infection.
"Doctor, what are the long term implications of hep C? I can't find any information other than a pamphlet that says I'm likely to end up with cirrhosis or liver cancer."
Dr Dirkhead barely glanced up from my notes. "Oh well, we all have to die from something."
I couldn't believe my ears. "But what are my chances? What can I expect? What can I do?"
Dirkhead closed my file and tossed it aside with an irritated sigh. "We'll have you in for a check-up now and then, but other than that, we'll just wait and see."
"But what can I DO? I've quit drinking... "
Dirkhead looked over his glasses at me - the first time he actually looked me in the eyes. "You quit drinking? Yeah, right!" He chuckled as he stood up and said, more to himself than me, "Quit drinking. Hmm. We'll see."
And with no more information than I walked in the door with, he was escorting me back out, saying, "You'll receive another appointment in six months or so. See you then." In other words, “don't call us, we'll call you.”
After meeting with Dr. Dirkhead, I resigned myself to not thinking too much about what the future may hold. I'd found a little more information on hep C - but not much. I discovered that it was not usually transmitted sexually and that many people who abstained from drink could live for many years without too much problem. This wasn't all that comforting, as I knew I must have been infected for around fifteen years at that point. I'd also found out that I was experiencing many of the common hep C symptoms; fatigue, joint pain and brainfog to mention the most prominent. Over the next two years, I was repeatedly told by Dr. Dirkhead that hep C couldn't possibly be causing my problems and he always told me - in so many words - that my symptoms were all in my head.
It was pretty much in the middle of all this that I met my current partner. I was in a place in my life where I'd given up on relationships but when he asked me out, I surprised myself by saying yes. I never thought it would lead anywhere but one date led to several. The time came when I realised I'd have to tell him about my hep C diagnosis because as far as I was concerned, he had the right to know that he was taking on a potential invalid. He also had a right to know that although rare, it was thought to be possible to transmit hep C sexually. I figured he'd run a mile but he didn't. I gave him one of the pamphlets I had to take home and read. He called me the very next day and arranged another date. We have been together since. I thought telling him about the hep C was the hardest thing I'd ever have to tell him, but how wrong I was because a year and a half later, I was faced with telling him that I had to take an hiv test.
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*Dr. Dirkhead is a pseudonym.
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To be continued.
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