Diagnosed with Hep C in 1998
I was diagnosed with hepatitis C in 1998; I was 23 years old. I probably got infected from injecting speed, but I had also had a tattoo done in Kathmandu, Nepal, so I am not sure how I got hep C. It made no difference to me. However, it did seem to make a difference to the medical profession, and it made my family feel better to go with the tattoo theory. My boyfriend’s reaction when I told him of my status was, “Oh for fuck’s sake, I suppose I’ll have to get tested now.” So much for support and sympathy!
My family GP (general practitioner) diagnosed me, and I was his first hep C patient. I had some friends with hep C, so I knew more about the virus than he did at the time. He read up on it and told me that a clinical trial using pegylated interferon and ribavirin was being conducted in my hometown. At that point, I was living 300 miles away. My mum offered me free board and lodging and said she would look after me for the duration of my treatment. I agreed to take part in the trial and started treatment in July 2000. I had genotype 1a.
I was given one injection of interferon a week and took ribavirin tablets four times a day. I generally felt pretty rough. My hair got very thin. I lost several stones in weight (one stone is 14 pounds). I had sores in my mouth and throat, and gum disease, which persists to this day. Then my boyfriend of nearly eight years ran off with an 18-year-old. In one fell swoop, I lost my home, my partner and all my plans for the future. I became suicidal and started blocking out the emotional and physical pain with heroin.
I was taken off treatment after 12 weeks. Looking back, I assume this was because of the deterioration in my mental health (they weren’t aware of my drug use). Although the trial had been planned for either 12 or 24 weeks, I had cleared hep C, and it has not recurred.
Although it took me some time to appreciate this, I know how lucky I am. I was 26, single, with a raging habit, and living at my mum’s. I battled with my drug use until a dear friend and his partner paid my fare to London, put me up for three weeks, fed me, and put up with me until I was done and felt secure enough to go back home. He knows what a special thing he did for me, and he remains one of my closest, most loved friends.
I found out later that the girl my boyfriend left me for was on the waiting list for a liver transplant. I never bore her any ill will, and I hope with all my heart that she is well now. She did me a huge favor by freeing me from an unsupportive relationship.
I’m now with a man who gives me all the love and support I could wish for. We share a happiness I never thought possible. I work for a homelessness charity, helping people with drug and alcohol problems. I help them get access to medical treatment, including hep C and drug/alcohol treatment if they want it. I know plenty of people with hepatitis C, some of whom had successful treatment, and some of whom have not. One of my oldest friends died of liver failure just short of his 34th birthday. Despite having hep C, he drank every day.
If you do hepatitis C treatment, I suggest that you have good support. I wouldn’t have gotten through treatment without the love and support of my family, especially my mum, as well as my dear friend and his partner. Please don’t let my experiences put you off treatment. It was worth all the stress and emotional pain, and I’m glad I did it. I hadn’t realized that my liver problems were causing me to feel tired and very depressed; I only noticed that once I got better. My experiences aren’t typical, and improvements in treatment mean that people don’t suffer such severe side effects. Many people manage to continue working and caring for their children throughout their treatment, which amazes me given how ill I felt.
Stay well and good luck!
What three adjectives best describe you?
Lucky, determined, loving
What is your greatest achievement?
Learning to trust again
What is your greatest regret?
The friends I have lost
What keeps you up at night?
My mum was just diagnosed with dementia
If you could change one thing about living with viral hepatitis, what would it be?
People’s attitudes and stigma about hepatitis C; also the fatigue and depression associated with it
What is the best advice you ever received?
Be kind to yourself
What person in the viral hepatitis community do you most admire?
Anita Roddick (founder of The Body Shop who has been open about her hepatitis C status)
What drives you to do what you do?
I have been lucky, but so many of my friends have not. I do what I do to honor and remember them, and to try to prevent further pain and death
What is your motto?
Not my circus, not my monkey (a Polish saying meaning, Don’t get involved in other people’s negativity)
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My spotty dog, Friday
If you could be any animal, what would you be? And why?
Friday because she is spoiled rotten, is loved to the moon and back, and is the happiest, sun-shiniest creature I’ve ever met