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'I lost my partner to it' What it's like to live with Hepatitis C

When Emily Reaper was first diagnosed, there was no such thing as Hepatitis C.

I’VE HAD THIS virus in my body for nearly 30 years. I found out I had it in 1990. Back then, they told me it was “non-A, non-B”.

In 2010 they gave it a name: Hepatitis C.

There are around 20,000 to 50,000 people with this disease in Ireland at the moment. Knowing that there is a virus in your body that’s active… it’s not very good for your mental health.

Some people cope better than others with that. Some find it difficult.

But what’s worse is knowing there are anti-viral treatments for it now that have a 95% chance of curing me, and I can’t get access to them because I’m not sick enough yet.

Worsening symptoms

That doesn’t mean I don’t have symptoms. I’ve worked all my life, and I’ve always been what you might call hyper. I’d barely be able to sit still long enough for a film. Now I could sit all day and just not move.

That’s just not me.

I’m extremely tired all the time. It affects my memory, my concentration. My joints ache and my bones aren’t great: when I bend down on the ground, I can’t get back up that easily. I’m only 50.

My viral load is going up. I get checked every six months, and it’s rising. The disease primarily affects the liver, and mine is starting to show signs of the disease. I’m getting more and more tired.

I’m a busy person. I have an adult daughter and a granddaughter with a disability who both live with me. I have a job. I have a car. I have insurance to pay, property tax to pay. I have responsibilities.

But in the background, I have this virus. And I just find it’s too much for me.

Getting the disease

I contracted the disease in the 1980s when I was using drugs intravenously. I haven’t used drugs in nearly 20 years.

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In my work with UISCE (Union for Improved Services Communication and Education), I deal with active drug users, people who are Hep C positive, people who are HIV positive, people who have given up drugs and people who are trying to get drug free.

I work with a whole range of individuals, and they all deserve treatment. I don’t care what society thinks of them.

Nobody knew about Hepatitis C in the 1980s and 1990s. That’s why 85% of intravenous drug users have this virus. And you can’t just blame us. Intravenous drug use is out there because people are hurt.

It’s to mask pain – it’s not to have fun.

Trying to help the homeless

I’m trying to advocate for treatment for people at all stages of drug use. But these people don’t show up in hospitals. They have so many appointments – you wouldn’t believe it.

You think homeless people just sit around all day doing nothing. They can be quite busy. Their health is last on their list: they need to get their money, they need to get a bed for the night, they need to access food, washing, clothes. They might have to get a sleeping bag because theirs has been robbed.

So they don’t show up in the hospitals, but they will show up at the methadone clinic every day. That’s how to treat these people. That’s where they’ll access care and treatment and peer support.

Get checked

This week, the Hepatitis C Partnership is launching its Know Your F-ing Story campaign. The F refers to your F-score. It’s the result you get from a simple, quick and painless fibroscan of your liver.

They have a Fibro-Van mobile testing going around to clinics across Dublin giving these scans free of charge to anyone with Hepatitis C. They’re bringing care to the patients, where they need it.

There are a lot of people out there who are eligible for the new treatments and don’t know it. Their liver is so bad and they don’t even know it.

Need for treatment

People have died of Hepatitis C and will die in the future – but they shouldn’t. I lost my partner to it, and he had a horrific death. He didn’t get any treatment.

If you have Hepatitis C, you need to connect with care; you need to educate yourself. To anyone with the virus I would say: just enquire. Just ask. Get your fibroscan done. You can decide not to get treatment, but you need to find out all your options first.

For me, the old treatment is not an option because it’s too tough on your body. I have too many responsibilities, too many people relying on me.

I might be eligible for the new treatments when I go for my next appointment in October. In the meantime, I have to wait with this virus in my body.

Emily Reaper is a community development worker with UISCE. She is awaiting treatment for Hepatitis C.

This week is National Hepatitis C Awareness Week. For more information about Hepatitis C visit, call Community Response on 01 4549772 or call the HSE Drugs Helpline on 1800 459 459.

Read: I’m not JUST grumpy – I’m living with one of the most painful conditions in the world

Read: ‘I’m ok with talking about my mental health problems – but will it affect my employability?’

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