When I was diagnosed with Hepatitis C I immediately went into shock. I had gone along to the doctor complaining of fatigue and feeling fluish and I felt as though I had led running through my veins. I noticed too that the whites of my eyes looked dull. I was not expecting to be told that I had a chronic disease – I didn’t feel that ill!  After the shock came denial.  I became scared and then angry and I went through all the emotions before I finally accepted it was really happening to me. Hepatitis C is not so much about how you caught it, it’s about how you live with it or better still, get rid of it. Neither option is easy.

Every fume you breathe in, everything you put in your mouth passes through the liver. The liver affects your blood, bile, lymph, immune system and digestive system. When the virus attacks your liver, it’s affecting many other parts of the body too.  Living with Hepatitis C means watching what you put in your mouth. No alcohol, low sugar, low fats, low cholesterol, low salt, no chemicals so little processed food as possible. Getting rid of Hepatitis C is more difficult. Drug treatment to eradicate the virus has advanced greatly in the last few years but success rate for the type I have is still only 50%. It means taking a course of chemotherapy for a year – a self injection once a week topped up with oral chemo morning and night. When I was diagnosed, the Consultant recommended that I wait for 5 to 10 years as he felt that a better form of treatment might be available by then. He warned me about the potentially horrendous side effects but for me, treatment seemed to be the only option. Without treatment my liver would slowly develop cirrhosis and perhaps cancer and ultimately the only option for life would be a transplant. I could not sit around knowing that my liver was being eaten away and not do something about it.

I started my treatment 6 months ago so I am at the half way stage. I think the biggest challenge has been an emotional one. “How do you deal with chronic disease without letting it take over your life?” It has not been easy and I struggle daily with coping with the sense of losing myself as a healthy person.  I have good days and bad days when I feel older than my 86 year old father – it has given me a good insight to how I might feel when I’m that age. I was worried about losing my hair but so far it has only thinned out and to most people I look the same. I am constantly tired and spend a large part of the day sleeping. I get very breathless too and this makes even walking difficult some days. My immune system is greatly reduced so I have to take care not to come into contact with colds or coughs. My eyes struggle with bright lights and I have difficulty in remembering the simplest things but I am told my eyesight and brain should return to normal post treatment.  I was warned about depression and I do have days when I feel very ‘low’ and hardly venture out of my bedroom but so far I have managed to keep this under control thanks to my family and friends who are always there to boost me on bad days.

The best day of all was when I had the result of the PCR test taken after 3 months. The test counts the amount of virus in my blood and it came back negative – the treatment is working.

I still have another 6 months of treatment to go. But I remain positive and I am so looking forward to having my body and mind back again and getting on with what I do best – enjoying life.

Note: Together with other Hepatitis C sufferers on the Island, we are working towards setting up an informal Support Group called Manx Liverty. If you would like to join us for coffee and a chat or anonymously via email please contact us at manxliverty@manx.net.  If you would like to contact me please write to me at PO Box 23, Douglas, IM99 3HJ or email tka5@hotmail.com.