Vital bonds
Ignatious Harling shares his progress as a hepatitis C peer educator.
I caught hepatitis C back at the start of the ’80s and didn’t get treatment until 2010. I wasn’t always treated particularly well by the medical profession back then. It was clear they thought I’d brought it on myself and weren’t going to offer treatment unless I was abstinent for a year. There was’nt the hepatitis C peer education around then and also a load of misinformation; they used to tell me not to worry as I’d probably die with it rather than from it.
These days, it’s different. Everyone gets treated whether they’re abstinent or not, there’s specialist support, and the testing and treatment is far quicker and more effective. But not everyone knows things have changed. And a lot of people lost trust in the system because it didn’t support them when they needed it.
That’s where I come in. I go to different support groups and talk to people about hepatitis C, dispelling the myths. I chat about my own experience and offer to give them the test there and then. There’s something about it coming from me, someone who has been there and got through it, that makes a connection with people.
It’s that connection, which I can’t quite put into words, that drives me in this role. It has a wider impact on people that goes beyond a simple test in the fight to eliminate this virus. It is a psychological step to opening up, a footstep on the road of self-care, a toe back in the water to test whether the medical world will accept them now. It’s the invisible benefit of doing this kind of work and it’s hugely motivating.
Unfortunately, people who need testing the most are those who have a history of injecting drugs and they still expect that old-style approach. They’re surprised to hear that these days they’ll be treated as human beings first with a recognisable health issue. There’s a lot of relief when they find out it doesn’t matter what they’ve done or are still doing, that they’re still entitled to be heard, seen and treated for this life-threatening illness.
Some have also ignored the idea they may have hepatitis C because they don’t want to think about it when life is too stressful in other ways. It’s known as the silent killer as there are apparently no real symptoms. I think that’s particularly true when you’re using drugs or alcohol. It wasn’t until I became abstinent that I noticed I had chronic fatigue and some cognitive difficulties. Up until then I just thought that was caused by age or substances.
The treatment I went through almost ten years ago was using the drug interferon which is very aggressive and hammers your immune system, with a 70-75 per cent chance of clearing the virus. It’s an elephant drug to shoot a butterfly. The new treatment is very targeted, much less aggressive so there’s a faster recovery time, and it’s 98 per cent effective. It’s a complete game changer.
My long-term hope is that we achieve the goal of eradicating hepatitis C altogether. It’s achievable and with peer educator projects like this, there’s the chance to do so much more along the way. There’s a good recovery community here in Bournemouth – I’ve bumped into lots of people I’ve tested now and it’s created a sort of bond. Someone else took a step to help them and that’s planted an important seed. You can almost see it growing, and it’s beautiful to watch.
World Hepatitis Day is on 28 July. Let us know what you are doing to raise awareness of testing and treatment.
The DDN Wider Heath guide to Hepatitis C and Health will help you to recognise stages and symptoms and offer people the targeted help they need. The guide is aimed at drug and alcohol professionals, support workers providing hepatitis c peer education, and wider health and social care professionals working with peopel with drug and alcohol issues.
Find our more and request free copies here.