Here are some personal stories from people who are living with hepatitis C. They describe very powerfully real people's life experiences that include discrimination, stigma and how this impacts on people's lives. - If you are someone living with hepatitis C and would like to share your story with us please go to the contact us section of the website to submit it.
Adam's story
What chance did I have? I spent my childhood in the seventies! I was encouraged to wear paisley shirts with huge collars, a bright orange T-shirt with a Jimi Hendrix iron-on and on 'special' occasions I was forced into a burgundy corduroy suit. Since then I have been known to wear the odd corduroy suit and loud shirt such was the pressure my mother placed on me to be fashionable. This affront to good fashion has really only past in the last ten years or so, but that is another story! Along with the bizarre choice in children's clothing, my parents endowed me with a love of music. Rock music mostly, with a little Cat Stevens and Simon and Garfunkel thrown in!
I have, as far as I can remember, always wanted to 'do' heroin ...
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Cheryl's Story
In August of 1996 I was at my local medical centre and the doctor asked me if I wanted to be tested for a few things like hepatitis C, HIV and diabetes. I thought, "why not, everything should be OK." It turned out I had hepatitis C. The doctor told me not to worry as I was OK. He said he knew this from my liver count. I asked a counsellor at a drug and alcohol organisation about hepatitis C. I wanted to know more about it as I had a partner who had hepatitis C plus two children. I found out what I needed to know and read a few pamphlets. Then I moved away from the community and I was four months pregnant. Of course I had never asked about being pregnant and having hepatitis C. It started to really worry me as I thought the virus could be harming this living person growing inside my body...
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Susan's story
My husband and I were at the medical centre originally for our son's benefit - he is a 27 year old handicapped lad who caught herpes at 3 months old and it escalated into encephalitis by the time he was 6 months old due to the lack of knowledge the medical system had of herpes and the seriousness of this disease. This young man is my stepson and the biological son of my husband.
Anyway after they had dealt with his problem we sought treatment for a nasty ulcer on my left heal. After they had treated the wound they administered 2 Panadeine Forte for me to take initially and then prescribed a packet of these and gave them to my husband to hold. I then had to fill in some outpatient forms which asked whether I had HIV/HEP C - of which I ticked yes to hepatitis C. When the nurse took the form off me and scanned the details to see if I'd filled the form in correctly, she rudely snatched the Panadeine Forte box out of my husband's hands and snidely remarked that "you drug addicts will do anything to get your hands on some kind of narcotic" and then glared at our son and muttered "poor kid"...
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Alison's Story
My girlfriend warned me not to disclose my hepatitis C status at the hospital because she received discriminatory treatment before, but I believed they would be fair and well informed about hepatitis C and the very low percentage of passing hepatitis C through to the baby via the placenta.
Well, I should have listened to my friend. How right she was! I was in a private room and thought how lovely - until I saw a sign above my bed that stated "infectious ward" - very nice! After arguments, I got them to take that down but they left my chart for all and sundry to see at the end of my bed. Unfortunately relatives of mine who had no idea I was hepatitis C positive happened to look at this file and although they never said anything, you could feel the vibes coming off them in waves of hostility. They are ill-informed and uneducated about the virus.
When I went to breastfeed my son the nurses treated me with hostility and I had to inform them that I was aware that I could only pass on the hepatitis C virus if I had open sores from mastitis and he had open sores inside his mouth and they're supposed to be the professionals?!
Jane's Story
I was in hospital as I had pleurisy and empyema. I was treated terribly. On entering the room that I would be staying in there was a sign above my bed saying hepatitis C. I had to fight to have it removed. They were really hesitant to do this so I as moved into an infectious ward instead.
When I was transferred to have my operation and have my empyema drained, one of the most insulting incidents would have to be when my parents visited with my 8 month old son and I went to hold him. An enrolled nurse snatched him out of my arms as though by just holding him I could infect my baby. I reported her to her superiors and I never saw her after that. I was assured the nurses were non-prejudicial but I suppose we are talking about human beings after all.
I have never encountered so much discriminatory behaviour and ill informed professionals regarding the hepatitis C Virus in all my life. It is no wonder that people don't reveal their hepatitis C status - let alone HIV status which I assume would be treated with even more disregard and discrimination.
