Personal Viewpoints

Living with Hep C

I was first diagnosed in the early nineties not long after Hep C was first recognised. As you can imagine it was a tremendous shock especially as very little was known about it at the time. I was very scared as no-one could tell me if I was going to live or die .A few years later I was put on treatment which was not very good at the time. I had to take three injections a week and it would last a year no matter what genotype you were. I was very ill while on this. I had other medical problems at the time and treatment only made them worse so after 3 months I had to cease treatment. I vowed never to try it again.

I went along quite happily for the next few years, getting involved with a support group and just tried to get on with my life. As time passed it became evident that they were learning more and more about this virus and better ways of treating it.  Through speaking to other people and getting support and information I realised that I could live with this and even better that perhaps if I gave the treatment another chance I could clear it.

I'm happy to say that a year past September I started on treatment which was much better than the first time around and although hard at times I successfully completed it. I have now been clear for a year and feel better each day. I am so glad that I gave it another go.

Anne
former service user

Supporting Hep C

I was taking one of our service users to her first treatment appointment at the local clinic last week. Getting to the initial appointment and starting treatment is really important but often a bit stressful for the patient, who may feel a lot of uncertainty about what will happen and who may also be unsure about how to get there and other details. So we often buddy people along to the initial appointments, after which most people will have got the hang of it and have formed good relationships with their nurse.

Anyway, en route we got talking and she told me that she knew lots of hep c positive people who refused to do anything about it. Jane, my client, said that she had tried to talk to her friends about the dangers of ignoring the virus, told them that it wouldn't go away and that they were putting their health at risk. She said, most people felt that it wasn't worth bothering about. Some didn't believe it was a risk to their health, others thought that it couldn't be treated, and a few felt shame about how they had contracted the virus and didn't want to think about their past. "An awful lot of people just don't care about their lives or what happens to them," Jane told me. But Jane cared enough. She had become a grandmother for the first time and wanted to be around as long as possible and to be as fit as she could be, to see her new granddaughter grow up. Jane had a cause, a strong motive related to other important events in her life which was helping to carry her forward.
The conversation with Jane was another reminder that so much remains to be done to engage hep c affected people with treatment services. It was also a reminder that for many people having hep c is not the most pressing thing in their lives, regardless of its consequences.

Jane is now getting to her appointments herself, though we still see her and support her in other areas as she goes through her treatment. She has started texting round photos of her granddaughter and has put one up on the support group notice board. I think Jane will be ok.

Jim
support worker