Sharon Murphy

Lassitude

Lassitude, my GP called it in his letter to the specialist at the time of my diagnosis.  Please see Sharon for her hepatitis C.  Symptoms include lassitude.  I went home and looked it up in the dictionary.

Lassitude:  n. a state or feeling of weariness, diminished energy, or listlessness.

The truth was the word barely touched the edges of how I was feeling.  It was 2003, September, and while I was happy to have an explanation for what I was experiencing, I was exhausted and very afraid. 

I knew nothing about hepatitis C but I sensed my life would never be the same.

Six months later I saw the specialist and decided to go on treatment.  I learned I had genotype 1 which meant 48 weeks of combination therapy.  I was pleased I was able to access the new ‘pegylated’ interferon. 

I was completely unprepared for what was to come.  I got reclusive and depressed but I persevered.  Completing treatment was one of my proudest accomplishments.

During my treatment I discovered a peer-support online forum.  I became part of a community of people who were going through treatment too and feeling much like I was. 

The friendships I formed then remain strong to this day. 

Four months after I completed treatment, in October 2005, I saw my specialist to review the results of my blood tests.  I’ll never forget hearing his words.  “It doesn’t look good” I didn’t understand what he meant at first because I had never contemplated the possibility of a relapse.  Sadly, a PCR confirmed the virus had returned.  I was devastated.

I relied heavily on the support of my friends on the peer support website to get me through the difficult period that followed.  I didn’t know how I would be able to recover and create a new life that included the virus.  I saw counsellors and social workers and I slowly started moving forward.

One year later I had a liver biopsy which showed I had level 3 fibrosis with ‘pre-cirrhosis.’  That scared me and gave me the motivation to make some necessary changes.  I stopped drinking alcohol completely and changed my diet.  I made the decision to minimize the stress in my life. My health and outlook improved remarkably.

In 2007 I joined the board of my state hepatitis council.  I work part time at a Needle Syringe Program, distributing sterile injecting equipment to drug users to prevent the spread of blood-borne viruses.  I am involved with a positive speakers’ bureau and have attended hepatitis conferences. 

I was right; hepatitis C has changed my life.  I have over the last few years forged a life with a quality I couldn’t have imagined at the time I got the news I had relapsed.

As for the lassitude, I still get it, but it’s manageable, most of the time.  I take care of myself and the virus behaves.