CHARLOTTE'S STORY: THINGS CAN CHANGE
I found out I had hep C in 2001. I had asked for a test because I was in pain with an inflamed liver. I was absolutely sure it was from hep C because I had shared needles with my partner who was living with hep C at the time. It seemed unlikely I would have gotten away with doing that, and I was right.
Over the years, I was tested from time to time and heard “Do you know you have hep C?” several times.
I was on the end of a lot of stigma and discrimination because of my hep C. It was across all my medical files. Any time I went to hospital or had a medical appointment it would come up, even when it wasn’t relevant. One dentist even refused to treat me because of it. I still don’t know how he found out because I didn’t tell him, but I live in a small town where gossip is rife.
It seems to me that hep C is seen as a marker of a drug user, although no-one has ever asked me if I was using before jumping to conclusions I was “drug-seeking”. I believe the reason I was refused pain killers for serious pain in the past was simply because I had hep C, because I don’t have any history of doctor shopping or using prescription drugs.
It was the stigma and discrimination more than any physical symptoms or health concerns that made me want to clear my hep C. But even though I really wanted to get rid of it, I was scared of the treatment. It seemed like the cure was worse than the complaint. I was particularly scared of the liver biopsy. Plus, I had seen people on treatment sick and struggling to the point of suicide. I just didn’t feel well enough to be that sick, if you get my meaning.
When I heard about the new tests and treatments, I decided to jump on board. I was on buprenorphine and hadn’t used a needle for a while, so I felt it was a good time to deal with my hep C. Plus I had heard that you no longer needed a biopsy and that the new medications didn’t have the same side effects.
I went to get another blood test so my doctor had all the information he needed to prescribe the right medication. I was really shocked to find I had cleared it somewhere along the line. I found out this is called a “spontaneous clearance” and it happens for about a quarter of those who get hep C. I was absolutely over the moon to be one of them.
My doctor didn’t know when I might have cleared it. I wonder if some of the blood tests I did only picked up the antibodies — that first test that tells you that you have been in contact with the virus, rather than the sophisticated PCR test that give you info about your genotype. And because the doctors weren’t up on hep C, they jumped to the conclusion that I was still living with the virus.
I was happy to be hep C free, but I was a bit cross when I thought of all the discrimination I had suffered as a result of my hep C diagnosis. I might have been clear for a long time. My advice? It’s absolutely worth getting tested, even if you are borderline about getting treated. You never know, you might find that like me you have cleared it spontaneously and can stop living like someone with hep C. I’m now fighting to get my hep C diagnosis taken off my medical records.
My next challenge is the diagnosis my doctor delivered just a couple of weeks ago: Chronic Obstructive Pulmonary Disease (COPD) from smoking cannabis. I’m working on a new health plan for coping with that right now.