“Try living with the knowledge that there is a cure, but you’re not allowed to have it.”
Clare had never talked publicly about living with Hep C before HIV Blind Date, but onstage she felt calm and confident. Straight-talking and self-possessed, she spoke candidly about mental ill health, life as an aunt, and “learning to live by [her] own rhythm.” I caught up with her after the show to continue the conversation.
Why do you think Hep C is so stigmatised?
I got Hep C through injecting drugs. I don’t anymore – I’ve given all that up. A lot of the stigma around Hep C comes from the fact it’s very prevalent among injecting drug users. People think you’re a ‘junky’, and that you deserve it.
But I honestly believe that a lot of is down to ourselves – the people living with Hep C. The fear of being stigmatised is what keeps us silent, and so we don’t talk about it and tackle the stigma. It’s hard – one person I met with Hep C said she won’t come out about it now because she has a young child. Her child was having a birthday party, and another parent found out she had Hep C – so they took their child and left. That’s just pure ignorance.
Hep C is called the ‘Silent Killer’ because it is estimated that 50 per cent of those living with it are unaware of their positive status.
That’s a real problem. People don’t really know anything about it – they say, “Oh I had Hep C”, when actually, they mean they had Hepatitus A or B. There’s so much unawareness about how it’s transmitted as well. Hep C is actually a lot more contagious than HIV. A lot more. The main means of contagion is through needles, but you can get it through sharing notes or straws too, if you’re snorting drugs. And you can get it from unsafe blood transfusions, dental treatment, and tattoos by using unclean needles. It’s actually very unlikely that you will contract Hep C through basic vaginal sex, but you can get it from anal sex, because there’s danger of fissures.
The medication you need isn’t currently available to you on the NHS. Tell me about that?
I have an illness that’s killing my liver, and it’s going to potentially kill me. I have depression, which is heightened by the fatigue and the pain that I suffer. Now I’ve lived with this illness a few years, and I just get on with my life. Because I’ve tried the old toxic interferon treatment, and it didn’t work for me, and so there was no other choice. But now, there is another option, and it’s a drug called harvoni, that has a 98 per cent cure rate and very few side effects. But, because of the cuts to the NHS, I’m told it is too expensive. I’m told I can’t access it, because I don’t have cirrhosis yet, which is when your liver is destroyed to the extent that you are basically on your deathbed. Try living with the knowledge that there is a cure, but you’re not allowed to have it.
What is your quality of life like at the moment?
It’s not very good. I can’t work at the moment – there’s no way I could hold down a proper job. Hep C is just like chronic fatigue. It’s not all the time, but suddenly it will just hit you, and when that happens, all you can do is collapse into bed. You can’t sleep properly because you’re in pain, so you’re tired all the time and you feel like shit. That just feeds the depression, and depression is bad enough that some days you can’t do anything anyway.
Did you have depression before you were diagnosed with Hep C?
I’ve been living with OCD all my adult life. Part of my OCD is fear of contamination, and I suppose the Hep C makes that worse – there’s something about knowing that I’ve got this thing inside me that feeds that fear. There’s a very high level of depression among people with Hep C.
Dan Glass, who played Cilla at HIV Blind Date, has written about the “psychological imprisonment” of people living with STD’s in our society. Have you experienced anything like this?
Well, sometimes I feel as though there’s just so much ignorance around Hep C that people don’t even know what it is. I mean, my family do, but they don’t really understand, you know? And then there’s the stigma – my brother is a single parent and I live with him and help him with his children. But the mother of my nephews and nieces doesn’t know that I’ve got Hep C. If she found out, she would think of it as a disgusting disease, and she’d be afraid that I would pass it on to her children. All those things are in the back of my head all the time.
Why did you want to do HIV Blind Date?
Well, I think the Blind Date format is actually brilliant! I’m new on the dating scene, because I’ve just come out of a very long-term relationship. I’ve got that fear inside me about how I’m going to tell someone I don’t know about my Hep C. Because I will talk about it openly, and will that put people off of me? I could never feel like I could just go out and shag someone, because even though the possibility of them catching it is very slim – from the type of sex that I would have, as a heterosexual woman – I would still feel like I would have to say something. It’s hard to feel like you’re always carrying that with you.
Words Kitty Drake and photography Ellen Pearson
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