How were you diagnosed with Hepatitis C, and how long did the process take?
I was diagnosed by a GU clinic doctor who was attached to the local drug advisory service in Colchester and tested everyone who wanted it for HIV and hep C, and also vaccinated against Hep B. I was tested on one visit and given the bad news on the next a fortnight later.
At what age were you diagnosed, and how did you cope?
I was about 25 or 26 years old at the time, so this was early 1990s. The doctor was fantastic and helped me to understand what the diagnosis meant and gave me some basic pointers on how to look after myself, she had a way of being supportive without enabling. I have spoken of her as being like the iron fist in a velvet glove. Sadly, I was deep into my addiction at this point so I found it difficult to care much about myself. There wasn’t much known about Hep C and I felt like I’d dodged a bullet by not getting HIV. It was even considered as a kind of badge of honour amongst some of us, a sign that you were one of the gang. Dumb really.
Sometimes I would worry about the disease and I would try and make positive changes but usually it would just be an excuse to use more drugs. When I thought about having Hep C I felt dirty, like a stereotypical scumbag junkie. The stigma is a real thing and something I still fight against even though I’m clear now. Ultimately, Hep C was one of the biggest consequences of my using that made me turn my life around and get into recovery but it could equally have been one of the biggest reasons not to bother…
What were your main symptoms?
Whilst I was still using there were ever more epic hangovers to deal with and constant low-grade sickness. Once I got clean and my physiology normalised I actually felt pretty good for nearly a decade. I would get occasional bouts of tiredness and odd days of brain fog but nothing that bad.
Eventually though I started to get the classic symptoms of fatigue and general malaise. Brain fog became the norm rather than the exception. Brain fog doesn’t sound bad but it’s a horrible feeling, it feels like you’ve got a size 10 brain in a size 9 head, concentration and focus get more difficult and I would be irritable and, at times, obnoxious. The best description I’ve heard is that it feels like the water in your brain needs changing like a dirty fish tank.
I didn’t think that I suffered too badly from depression but with hindsight I can see that I had pretty much a constant low mood and a listless apathy. I had a terrible episode of depression after my initial treatment with interferon and ribavirin failed. That was a deep hole.
Do you know how you contracted the virus?
Sharing injecting paraphernalia with an ex on a disastrous relapse bender. It is an ironic that trying to stop using drugs can be the most dangerous time in a junkie’s life – things get chaotic. I used a clean needle but shared water and a spoon. I remember getting horribly ill for about two weeks after that. I don’t think everyone feels that bad when first infected but I definitely did!
How much did you know about hepatitis C before your diagnosis?
Nothing at all. It wasn’t even on my radar, HIV was the thing back then.
What have you been told about your prognosis?
I was told that it was a slow burn disease that could lead to cirrhosis, fibrosis and cancer and given good advice about total abstinence from drugs/alcohol and other lifestyle changes.
Have you had any treatment?
Yes. I had a 48-week treatment of peg interferon and ribavirin which didn’t work but a recent treatment with Zepatier has given me SVR+12 (sustained viral response; SVR+12 is defined as unquantifiable/undetected viral RNA at 12 weeks after the completion of treatment) and I’m confident that my retest at one year will show SVR too.
Has your diagnosis affected your lifestyle in any way?
Yes. I’ve had to change a lot to deal with the diagnosis and living with the disease almost became a full time job with the need to cope with the symptoms. My initial diagnosis and the support I received at that time made all the difference in how I looked after myself.
What do you find the most difficult aspect of the condition?
Fatigue and brain fog… difficult to answer this one actually because it’s the whole package that wears you down. It’s the death of a thousand cuts.
Are you happy with the NHS care you have received?
Broadly yes. GPs were (and still are in many cases) totally clueless and don’t seem to take it seriously. I was told as recently as five years ago that there are no symptoms associated with Hep C. I’m generally amazed at how little is known about Hep C by the general public. It’s like nobody really cares. No information campaigns, no TV adverts and only a couple of charities against the hundreds of those advocating for HIV.
The specialist centre at Addenbrookes has been great and I’m grateful to them for my care and treatment, it’s just a shame that they’re 45 miles from where I live. I’m lucky to have the resources to get there; many don’t.
I was disgusted at the way that the new treatments were delayed by the government. I wonder how many died whilst the bureaucracy ground through the many obstacles placed in its way?
The ODN system (Operational Delivery Networks, the new structures through which hepatitis C treatment in England is delivered) now seems to be doing a fantastic job though, I think that NHS England will get the job done and prevent a lot more suffering.
Do you think the depth and quality of information offered to people with hepatitis C in the UK is adequate?
No!
What would you advise a newly-diagnosed patient?
Don’t panic. You have time to treat the disease and the treatments are effective. Talk to the Hep C Trust and arm yourself with all the information you need to look after yourself and then hassle your GP until you get referred to your local ODN. Most of them will be actively looking for people to treat by now or in the near future. Look after yourself, don’t take drugs or alcohol and find out what a healthy diet means to you.
What do you consider your greatest achievement to date?
Getting and staying clean! Achieving SVR is up there though, and managing to live a good life despite having a chronic illness. I’ve helped to fight against the stigma of having Hep C by speaking out.
What is your greatest hope/fear for the future?
First off, it feels amazing to even have a future. I feel like I’ve got my vitality back so now it’s all about enjoying being able to live a life without the shadow of Hep C colouring everything. Just living a normal life is enough.
For more information on hepatitis C, visit www.hepctrust.org.uk or www.britishlivertrust.org.uk
