Co-existing with Hepatitis Co-Infection

From the lessons my life has taught me so far, being silent about aspects of my identity or health that carry stigma just turns the volume up on unwanted ‘shame’. I wanted to get halfway through my hep C treatment with the knowledge that the medication is before I wanted to write about my experience of co-existing with co- infection. Due to now actively looking for work, the stigma still present even within the HIV community and to keep myself safe I decided that I wanted to remain anonymous.

Let me return to where this new battle to get well began. I will never forget that sunny bracing September day in 2014. I had three voicemails from my Consultant’s secretary telling me that
I urgently needed to meet with my consultant. Fortunately, I was with a close friend. I knew it was not good news when I spoke to the secretary, I could hear it in her voice. She could only get me an appointment in three weeks’ time. This did not seem to reflect the urgency in her voice. All I could think was WTF???

When I got home I called the clinic and asked to speak to the health worker. They looked at my records, then told me that they needed to get consent from the on-call doctor, went off for the longest 15 minutes of my life and then returned my call, telling me not to panic, that a hepatitis C test had come back positive. They said they would give my details to the Co- infection Clinical Nurse Specialist and they would be in touch.

There was no checking what support I had in place. I just remained silent. I put down the phone down. My main question was how had I caught it and why now? That night, I scared myself silly reading information on the internet. Going by the internet the choices, type or role I play in sex and me becoming hepatitis C positive did not measure up. I found a lot of the information to be misleading.

My family and friends have been marvellous and I know I am not alone. Yet, this new journey still feels such a lonely experience. This new diagnosis makes you think when about when to disclose and to whom? Why are sexual health organisations not discussing this as a growing epidemic within the wider community? World AIDS Day made the national press in 2014 though with little mention about the growing cases of people living with co-infection in the UK.

Living with co-infection has made me question this new reality. This is not a sexy subject. The fact is there is also no money to be made from co-infection, like the infrastructure that supports HIV prevention and care. There has been so much learnt about HIV. It is just a shame that it appears that this has not been taken across all blood- borne viruses. The stigma or fear of hepatitis C from my experience is like where HIV was in the height of the HIV epidemic. As I have started to disclose my status I have come to realise how hepatitis C is a much wider issue and what makes me angry is that no one is talking about it.

I knew through my research that I wanted to start treatment soon. I knew the old treatment and
the nasty side effects it may bring. Unlike HIV where there is no cure where the healthy choice is to continue with a medication regimen where

I face minimal side effects, I knew I wanted to take the opportunity to clear this virus as soon as possible. So I decided with my clinician’s support that I would do 24 weeks of treatment of ‘old school’ medication: ribavarin and pegylated interferon.

Before I started treatment I wanted to get my body as ready as possible. I went to the gym a few times a week, continued with counselling therapy, had acupuncture, massages and booked things to look forward to during treatment. This helped me to remain optimistic whilst all the new information settled in my mind. I think continuing to have this support structure during treatment will only reap the benefits on my journey to good health.

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