“Many people who are living with hepatitis C feel marginalised by society. I’ve met people who don’t think they are worth it, that aren’t assertive and who may not be able to communicate their feelings effectively so they don’t engage with services. They don’t get what they are entitled to and need support to be empowered.”
“It is all about getting out there and encouraging and supporting people to be empowered”
There are many hep C stories out there. This is Louise’s.
“My name is Louise and I am in recovery from active drug addiction. After I had a motor bike accident and my hip, my broken hip wasn’t diagnosed, I was careless around my drug using practice and I shared needles, shared water, shared spoons with people that clearly had hepatitis C. A year later I got tested, I didn’t really understand what I was getting tested for and got told I’ve got hepatitis C. Because I had lots of other health complications, where my hip had been left broken, I was offered treatment for hepatitis C fairly quickly. All I’d heard [about the treatment] was horror stories about how I was going to relapse on drugs and I was going to have mental health breakdowns and maybe be suicidal so I kind of said ‘well do I need to do it now?’, and the answer was no, so I didn’t.
I had underactive thyroid, I was coming out of drug addiction, I had a broken hip that had went undiagnosed, I had serious life infections, so it was very hard to actually quantify and say ‘Yep, that hep C was behind that’ because I don’t, I genuinely don’t know.”
“But four years later in 2007 I was offered treatment again and I spoke to my partner who is now my husband and my child and we agreed to go for it. I’ve been on the end of discrimination because of my hepatitis C status so I felt quite passionately that I wouldn’t want to inflict that on anybody else. So I did the treatment, to be honest I flew through it, they told me I’d lose weight, I said ‘bring it on’, I didn’t lose a pound, I was devastated, I worked all the way through it, I did my degree all the way through it and some of my closest colleagues at work wouldn’t have even known what I was undergoing.
Some of the people with hep C, by the very nature of how they’ve got it, are marginalised by society already so they don’t , some of them don’t think they’re worth it, aren’t assertive, can’t communicate effective, don’t engage with services and so by the very nature they don’t get what they’re entitled to. So for me it is all about kind of getting out there and encouraging and supporting people to be empowered.
In 2012 an opportunity arose at work to set up a hepatitis C project and because all I was still hearing, five years later was that the treatment was going to wipe people out I kind of blew my anonymity and I’m quite happy to talk freely about my experiences.
The message I want to deliver is that you are worth it and that I will help enable you to get the treatment and the care that you deserve.”
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