Living with hepatitis C: A patient’s journey, from diagnosis to cure

Amanda Lyons

11/04/2018 2:59:14 PM

Pamela Wood has lived much of her life as a person with hepatitis C, fighting stigma from the world outside – but also from within herself.

Pamela Wood has found anyone can be living with hepatitis C. ‘I know psychiatrists, psychologists, musicians, lawyers, all sorts of people with hepatitis C. It could be anybody,’ she said.
Pamela Wood has found anyone can be living with hepatitis C. ‘I know psychiatrists, psychologists, musicians, lawyers, all sorts of people with hepatitis C. It could be anybody,’ she said.

Pamela Wood is a mother of four who has worked in various industries, including helping to run a family business. These days, she describes herself as looking like ‘a fairly ordinary little old granny’ who enjoys her retirement and spending time with her grandchildren.
She is also enjoying a life free of hepatitis C, a disease with which she lived for many years. Pamela has now been cured of hepatitis C with treatment by direct-acting antivirals (DAA), via compassionate access from a drug company before the treatment was listed on the Pharmaceutical Benefits Schedule (PBS). Support from her GP during the process was instrumental.
Pamela sat down with newsGP to share what life is like on the other side of the consultation for patients with hepatitis C.
Pamela’s diagnosis was delayed due to her own feelings of stigma and shame
I knew I hadn’t been well for some time, and that something wasn’t right. My GP just kept saying things like, ‘You’ve got four small children, no wonder you’re tired’, and I’m thinking, ‘Yeah, but I fall asleep at four o’clock in the afternoon’.
He was also my children’s doctor and a local doctor in my community, so I thought I would go and see someone else. I told the new doctor, ‘This is how I’ve been feeling’, and he suggested running some blood tests.
He then talked to me about my background and risk factors and things like that, and I had to confess I had used intravenous drugs when I was younger, for a very short period of my life when I was 17. I wouldn’t have disclosed that to my family doctor at the time.
He suggested a hep C test, and I said, ‘I want to think about it for a while’, and I did – for two years. Eventually I started to feel much worse so I did go back and have the test and yes, I was hep C positive.
Diagnosis turned her world upside down
Everything else in the world was just the same; I still had four children, a husband, a business to run, school committees, all these other things that I was involved with. But my life felt very defined by that small period of time when I injected drugs.
So I punished myself, constantly, for a while. I didn’t tell anybody, not even my family, when I was first diagnosed. I was just so ashamed and guilt-ridden, and felt like a fraud, that I’d been pretending to be this other person when in reality I was this horrible person who’d taken drugs.
Telling her family was very difficult
My husband was shocked and didn’t quite know what to do with the information, to start with. It did change the relationship a little bit, although that sorted itself out eventually.
I was able to get my children tested when they were young and they didn’t have it. So in that respect they were covered, but it took me a long time to tell them.
I just about had a nervous breakdown when I did tell them, I had put it off for so long. But they just said, ‘Oh thank God, is that all it is’. They thought I was going to say I was dying of cancer, because I had had lymphoma previous to that, as well. That was what they’ve been worrying about, and I could have put them out of that agony.
So it was a great relief, in the end, to finally tell them. All the secrecy could stop, and once it was out and open, it was great. My fear of judgement was probably greater than the actual judgement.
Stigma meant Pamela was cautious about in whom she confided
I was careful about who I told; I didn’t tell people I worked with, for example. So I guess by being selective, I did avoid hurt.
A part of my fear of telling my children was that they would tell everybody. Once I’d told them, it wasn’t my information anymore, I had no control over it. They were still at school locally and weren’t aware of how cruel people could be about things like that.
So many people with hep C have never told their family. I know how hard that is, the fear of not being able to see grandchildren and things like that.
Pamela experienced significant stigma within the health system
I have very difficult veins and once when having a CT scan, the anaesthetist was putting in the cannula without any gloves on. There was blood everywhere and I had to say, ‘Please be careful because I have hep C,’ and he just went off and started yelling that I should have told him before, and how could I put him at risk.
I’d love to have had the courage to say, ‘It’s not my responsibility to protect you, that’s why we have precautions’. But, of course, you don’t, you’re already feeling intimidated laying on a table half-naked and going into a machine that’s going to change your life with the results, one way or another.
Stigma did not end after being cured of hepatitis C
When I was going for surgery recently, the surgeon wanted to change the plan when he found out I had hep C. He was an older surgeon and had not become updated, and was quite convinced I was still infective because I was antibody-positive.
I thought, ‘We could have a long argument here, but I think I’ll just decide not to do this’, and left.
Like many fellow hepatitis C patients, Pamela has come to hate ‘the question’
Usually stigma is much more subtle, though. You tell people you have hep C and you see the rolling of the eyes. The next question is nearly always ‘How did you get it?’ I always think, ‘I’ll lie, I’ll tell them it was a blood transfusion or something’, but I can’t, that’s not right. So I’ll tell them and quite often there’s a subtle change in the way that you’re treated and how people react to you.
I know a lot of people with hep C, and it’s something they hate as much as I do. Because the moment people ask that question, they’re making a judgement, that’s how it feels – they want to judge me for how I got this, to know whether or not I’m a worthy person.
You always think you’ll be strong and it won’t matter, or you’ll have a witty comeback, but I don’t, I just do the same little melt, ‘Oh, I got it from drugs’. Then I go into pathetic mode and probably miss most of the consultation.
I have been told that it’s a valuable part of collecting a social history, but I don’t know that it is, this far on. If I was currently using, maybe. But that’s a different question – ask me that, if that’s what you want to know.
So I do have a problem with the question, because I don’t think there’s worthy hep C patients and unworthy ones, just people.
Pamela found support from her GP instrumental during the process of being cured via treatment by direct-acting antivirals (DAA)
My GP was invaluable in helping and keeping an eye on things. We had a good relationship, I trusted her and she trusted me. So when I went in and said, ‘I don’t know whether there’s something wrong with me or if I’m just being neurotic about this medication’, she was able to say, ‘No, I don’t think it’s going well, let’s do some blood tests’.
And she did, and there were some problems. It was the fact that she knew me that made that difference.
I can’t emphasise enough the importance of having a good working relationship with a GP, and one who was confident to work with the hospital when things weren’t going well. Because with these new meds, one of the things that they tell you is there’s hardly any side effects, so when things started going wrong, I thought it was in my head. But I had a rare side-effect that was easily dealt with when it was brought to their attention at the hospital.
Life after hepatitis C has been a revelation
It just took such a long time to sink in – I believed for so long you couldn’t cure this disease. They had to give me a print-out of my test because I needed to see it in writing.
There was also a little bit of shock which I thought was nuts, but a lot of other people I’ve spoken to have said the same thing. I’ve lived knowing I’ve had this for so long, who am I now?
I had to do another little readjustment in my thinking, to take it out of my life. That was a weird feeling I hadn’t expected.
But in terms of not being infectious, I had no idea how much that had worried me, subtly. I remember going to the dentist and smiling, because I knew I couldn’t infect her no matter what she did. And it was then I realised what a relief it was. That was wonderful.
There are some things Pamela would like GPs to know from her experience as a patient with hepatitis C 
I know psychiatrists, psychologists, musicians, lawyers, all sorts of people with hepatitis C; it could be anybody. People don’t tell because they’re afraid. We’re already judging ourselves, we don’t need anybody else to judge us.
And those people who are still using [intravenous drugs] need to be able to tell you that and feel comfortable to have those conversations, because they haven’t always been treated well within the health system.
If you have a good relationship with your patient, it’s like treating anybody else. And treating somebody with hepatitis C who doesn’t have complications is so simple now, like managing diabetes, except you’ve got a cure.
GPs have this opportunity to treat people and cure them, and hopefully eliminate the disease. This is an amazing thing.

Visit Hepatitis Victoria’s web page on stigma and discrimination to learn more about the stigma faced by Pamela and other patients with hepatitis C.
This interview has been edited and truncated for clarity.

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Dr Arshad Merchant   13/04/2018 7:50:27 AM

Every GP knows how to diagnose and help patient to get the best care. Unfortunately GPs are not hepatologist and what patients, public and now RACGP not realising is the limitations of being a GP. It takes 5 extra years to become a hepatologist after completion of a specialist training and it takes 3- 6 months for a hepatologist to initiate a treatment after extensive investigations. How can you replace this in a 10 minute consultant to give a script. Who takes the responsibility ? In the eyes of the Law, if something goes wrong, GPs are crusified as negligent and all this for a $35/- rebate.. a no brainer. Please concentrate on public education in GP role rather politicising

Mai Maddisson   13/04/2018 9:49:17 AM

Dr Merchant
Do I understand that GPs are no longer doctors and ration patients to the time they are prepared to share with them? The level B consultation used to permit >5-20 minutes. The patient was billed at a higher rate thereafter.
If the time is now rationed it may be better to not go to a GP at all. There is nothing worse than half-baked, rushed information sending the patient away confused, at times to an empty home with no one to even debrief the next step. After all confidentiality was part of the reason people went to GPs.
Put yourself in the patients' shoes. Would you go through the trauma of hearing of something sinister dished by a whisk- whisk out visit.
What is the official GP role these days lest I need to visit one. I would hate to consume their time inappropriately? What other pathway would I have?
The above is hypothetical from my perspective as I have a GP who I know would give me the time needed: But it is still scary. What if they ceased to be available?