Veronique was shocked when she was diagnosed with hepatitis C and didn't know how or when she had been infected because she 'didn't fit the usual profile'. Thank you for sharing your story, Veronique.
I found out I had Hepatitis C in 2011. I had never heard of it. This came completely out of the blue, with no symptoms other than an occasional pain under my ribs on the right-hand side which led me to make an appointment with my GP. Gallbladder stones were initially suspected but not found. No one knows when I was infected or how. I didn't fit the usual profile – intravenous drug taking, blood transfusions, dental or surgical treatment abroad.
I was referred to the local hospital to meet the hepatitis nurse. She went through a kind of flipchart explaining the functions of the liver. The illustrations made it look like a children's book. Then she told me about the treatment, six months of drug treatment that would probably make me feel very unwell. I asked if there were support groups or people I could talk to. She replied that I probably wouldn't find that helpful. Then she asked me when I wanted to start the treatment. The whole thing was totally unreal. I felt completely at sea and desperately alone and could not answer her questions. I had retrained for four years into another profession following a very unexpected and traumatic divorce and had only been six months qualified into my job. This new job was my way up from the ashes of my previous life.
I decided to see a consultant privately at one of the centres of excellence for liver diseases. One of the first things he alluded to was the stigma surrounding this illness. The message was, in brief, to choose carefully who to disclose this to. I felt angered by this and even more alone.
Mild liver damage
My liver damage at this stage was mild and he gave me two options. Get treated now with a high chance of clearing the virus but no certainly that I could continue with my job due to the side-effects or wait for a trial. Decisions again. I chose the latter and attended yearly check-ups. During this time I tried to take control of the situation. I bought myself a juicer, cut out all alcohol (which wasn't a hardship as I had never much liked the taste of it), tried to make my healthy diet even healthier, tried Chinese herbs and acupuncture.
A couple of years later, the hospital contacted me with details of two possible trials. Trying to weigh up the medical information, reading about the possible side-effects, some of which included death, and if they did not work having to fall back on the dreaded Ribavarin/Interferon cocktail was a complete nightmare. Such was my need for reassurance and certainty that I even tried to explain the pros and cons of one trial over the other to my eldest daughter, who of course was just as much as sea as I was.
I discussed it too with the consultant heading the trials. This was traumatic in itself as he did not seem able to tolerate my anxiety and indecision. In the end he made the decision for me. There were other trials coming up much shorter treatments and without Interferon and we agreed to wait for this. In January 2015 I became patient zero of a 12-week trial for Genotype 3 patients with cirrhosis who had not previously been treated. By this time, my fibrosis had developed into an early stage of cirrhosis. There were further complications as different labs came up with different analysis of my genotype. More stress, more anxiety but also first-class treatment and support from the trials team. In the end the treatment started, my viral load dropped massively after a few days of treatment and I cleared the virus without having experienced any side effects from the medication.
I remarried in that same year, Hep C free.
A year later I became a grand-mother for the first time. As I cradled my grand-daughter's perfect brand-new little body in my arms seconds after she was born I remember feeling so relieved that this horrible virus was no longer inside me.
Although the main threat had now gone away, a level of denial about what had happened remained. I did not initially take on board the full significance of the six-monthly appointments at the hospital for scans and blood tests, that is, liver cancer surveillance. As time went on I came to accept that the sonographer's words," nothing has changed", were the best news I could expect. The blood test results produced mixed feelings. Elation if my platelet count went up, disappointment if my cholesterol increased. My trust in my body had been strongly eroded. I became inhabited by a new sense of vulnerability and concerns about how my liver would cope in the face of other illnesses particularly those involving strong medications.
Minimal symptoms
Then in 2020, Covid came along. What did it mean for me? Before the first lockdown had been officially declared I decided to work entirely remotely. One of my six-monthly visits to the hospital fell at the end of March 2020. I need not have lost sleep at the thought of attending a usually bustling hospital during a pandemic. The place was like a ghost ship. I was the only person attending the out-patients liver clinic and, again, the only patient at the ultrasound department on that day. I was told that there were 300 patients with Covid at the hospital and advised to push doors open with my foot. Little was known then about the virus and my doctor's parting words were simply- "don't get it, we don't know how your liver would cope".
Whilst the same rules applied to everyone at the beginning of the pandemic, I felt that strong sense of isolation and aloneness again when relaxations were introduced and testing was no longer widespread. My difference was made visible again this time from a social point of view and although I tried to navigate this phase of the pandemic as reasonably and rationally as possible, for my sake and that of others, I sometimes felt their lack of understanding and resentment.
Despite the undeniable damage to my liver caused by the virus, my symptoms even before treatment were minimal and my high energy levels remained unchanged. What I hope to have shared through my story is the unseen emotional and psychological impact this illness had on me in different ways and through the course of external changing circumstances. Although this is rarely talked about, I suspect I am not alone in my experience. For those for whom it resonates, I hope they will find it helpful.
