April 15, 2007
Stephen M
After a likely 23 - 24 years of infection with absolutely no idea and no symptoms I found out I had hep C from an ex-partner (and fellow ex-user) after they called me in a panic to say they had just been diagnosed and telling me I should go and get checked (as they knew they had not been at risk since that time, all those years ago).
I was terrified but also convinced that my nine lives had not ran out so I went to my GP. He told me it was unlikely - that I would have shown symptoms and that my liver tests had always been good. I am such a hypochondriac I had got my doctor to test me for just about everything over the years, but never for hep C.
A few weeks later he was eating his words. He was as shocked as I was.
It's most likely I caught it from IV use with my ex-partner, they had spent a long time in India before I met them and most likely contracted it there before bringing to little old London to share with me. Either that or we both contracted it from a very dubious tattooist in 1983 when we both decided it would be very cool to have identical tattoos (by the way it isn't - don't do it kids!).
I was referred to the specialist but this took over 6 months - during which time I was panicking and starving for information about what I was convinced was a terminal illness that was going to kill me painfully and slowly at the same time as ostracising me from the rest of society. I couldn't wait that long so paid through the nose to go privately - something I resented having to do but was glad that I was able to.
They explained that a few months wasn't going to make much difference after 23 odd years of infection.
So 6 months after diagnosis I found out I was genotype 3 and that my liver enzymes were slightly elevated. I was thrilled with the news about the geno 3 because after spending many sleepless nights on the internet trying to get information I knew that the treatment was more likely to work and that I wouldn't have to do it for a year - soemthing which frightened me.
When I told my partner about my diagnosis they looked like I had punched them. We had not been together long and were still in the lovely happy lovey dovey stage - until this literally took the wind out of sails. I told a few close friends - they looked confused - not sure how bad hep c was or what it really meant for me. I was lucky that they were all supportive though.
I knew straight away that I wanted treatment - anything to get rid of the bugger and I wanted to start with the biggest gun I could find - eg - pegylated interferon. That took another 6 months to arrange - waitng for results, going for ultrasounds etc etc all took time waiting waiting and getting more traumatised by thinking about alll the negative possibilities. I wanted a biopsy but the waiting list was two years (!!!) so the docs let me go on treatment without one. The general consensus was after 23 years or so there was almost certainly liver damage and that treatment should start asap to stop it getting any worse.
I struggled with giving up alcohol after diagnosis. I don't think my drinking was excessive but it was a part of my life and having a meal without wine I found really difficult. One day I would be perfect - vegetable juices and water all day, exercise good organic food etc the next I would be chuffing away on the fags with "just one last" glass of wine in one hand and a big steak for dinner.
By the time treatment had started I had given up - I didn't want anything to jeopardise the efficacy of the treatment and I only wanted to do it once - and properly. I lived like a monk for the next six months - endless water - I'm surprised I didn't turn into a bottle of Evian. Lots of juices, milk thistle, vitamin c, artichokes etc etc. I also continued smoking which I'm sure wasn't good but it made me feel like I at least had one vice left to enjoy.
At first treatment wasn't actually that bad and a bit of an anti-climax after all the doomy stories you hear about it. Which is not to say it was nice but it was bearable. However, there were many dark days when I I felt like I had been kicked from head to toe, I think I pretty much gave up on sleeping altogether by month 3. My hair went all weird - dry and brittle and thin. I lost weight and that was fab - though disappointingly it went back on rather fast once I'd finished the course - but for perhaps the first time since I was 12 I could convincingly wear a pair of hipsters!
The worst was the mood swings. I would have episodes of totally losing it - my partner bore the brunt of that but it was also inflicted on many innocent men, women and children during my brief forays into the world.
Anything could set me off in a rage and once I started it would take hours to subside - I knew I was doing it, I knew it was the treatment doing it to me - but I couldn't control it.
Equally I could cry for hours over the slightest thing - I took on all the pain of the world - became hypersensitive to anything at all - even an advert. If I watched the news any story about any problem from around the world would suddenly become my problem as if I was actually enduring it myself- eg starving children, carbombs, forest fires etc.
I tried to find support groups etc but even in London this was difficult. Information seemed to only be on the internet.
I managed to work through half of my treatment but only just and in retrospect I wish I had just taken the entire time off because even though they were supportive I felt incredibly guilty on the days I did'nt drag myself in - sometimes the 30 minute bus journey was too much of a physical, emotional and spiritual struggle for me - let alone a day trying to be bright and perky in an office.
I am now a year down the line - the treatment side effects fell away fairly quickly after I finished but to be honest I still don't feel quite 100%. All my tests are good and I am still undetectable. HURRAY. However I am still totally paranoid about the virus coming back again and I wonder whether I will ever really feel that this chapter of my life is over. I'm quite open about my illness although there are some people I meet or know who I don't talk to about it - I just know they wouldn't understand or comprehend what hep c.
Now I have found work helping other people with hep C and that has been really positive. It keeps my situation in perspective which is good and I hope that I am helping to make things a little easier for people who are at the stage I was just a few years ago.
I think all of us have a responsibility to get this illness on the public agenda all over the world.
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