Transitioning: HCV and the Grieving Process

Written by: Mindseye

It was a shock to learn that I had a potentially lethal disease. Even at 47 years old, I still feel invincible, still connected to youth and not particularly grown up at all. So, when I found out that I had Hepatitis C, I never even heard of C before, I was in shock and disbelief. Tests confirmed that not only did I have this virus, it was decades resident in my system, and aggressively attacking and killing my liver. So, reality becomes a rapid review of my life to make sure I had accomplished (most of) my goals. For the first time I was looking at the end of my life.

I thought that I might die. I began to look for loose ends. I prepared a list of music to be played at my funeral. All of the research and articles that I read about HCV and the things my doctor told me, translated into information supporting my death sentence. Keeping these thoughts private were not easy. My family became very upset. I began to slip into depression, much bolstered by the effects of Interferon. I became trapped and crippled. I could not work due to the effects of the Interferon. I lost that part of my identity that had always been associated with my productive, active professional life.I was, in fact, dying; if not from my disease, then from my own self-realized bondage.

Grieving not only applies to the loss of a loved one. It applies to any loss in life, be it small and insignificant, to major loss affecting lifestyle and social change. We all grieve every day for the many changes that occur in our lives.

The grieving process has four distinctive stages: Disbelief, anger, sadness, and acceptance. For me, disbelief was that feeling that began when I was first told that my Doctor suspected Hepatitis and I was sent to be tested. How would I get Hepatitis? I don’t know anybody with Hepatitis. Years ago I was immunized against Hepatitis B, so I couldn’t have that. So what gives? Obviously the test came back positive. HCV. What is this? I began to look for information on the Internet and I just freaked! This is a deadly disease with NO CURE! How? Why? Why me? I was stunned. And then I got very angry. I did not deserve this. Sure, I did some stupid things when I was young, but I changed all of those years ago. I had nearly 15 years of sobriety. I was a contributing, respected member of society. This was not right; an injustice. I raged out. I became paranoid and accusatory. But there was nobody whom I could blame. I slipped into self-pity, predicting my own doom. Bouts of crying occurred regularly. I wept for myself, and for all others who pitied me.

I began the process of determining how serious the infection was. High titer, moderately aggressive active chronic with moderate liver damage and inflammation. Couldn’t believe that, either. My family and co-workers were shocked. Treatment was discussed. I learned that Interferon was the only FDA approved drug to treat this disease, and that results were "disappointing." I was offered the opportunity of taking part in a study group researching results of first-time treatment for HCV with Interferon/Ribavirin combination. I was told that the chances of success were thought to be greater than on Interferon alone, but still maybe only 50 %. Many a sad night passed as my wife and I explored the depths of fear and sorrow.

How could I advance to acceptance? One thing was for sure; I was not going to make any progress without somehow losing the anger and despair, and completing the grieving process.

Acceptance comes gradually, in small steps, based on glimpses of insight. The reduction in stress was paramount in bringing this about. I could not begin to heal with the amounts of stress I had. But the release from stress gave me time to think in positive ways; look at things from different angles. The cup was half full and not half empty. I began to realize that it did not matter how or why I had this disease. It did not matter that doctors were at a loss as to how to cure this disease. What became important, came into focus, was me. I began to reaffirm my purpose in life, which simply is to reach my maximum potential and have maximum positive impact on others, including my family. I became able to see how I got way off the track for all these years, and how HCV shook my fragile safety zone which I had established to shelter me from perceived dangers, and as it turns out, joy as well. I would not allow joy in my life. And I realized that death was not imminent; I had time.

I began to re-examine my beliefs and the sources of those beliefs. The answers suddenly became very simple. They were there all the time. I knew them all along. The Truth is found in many forms, so that all can access them. Simplicity. Live for today. The past is the past and cannot be changed. The future can only benefit from positive living today. Be grateful for all gifts; a beautiful tree, a flower, a shared emotion. Stop judging myself and others and generating guilt and blame. Trust in a Justice that is greater than that devised by Man. Life will go on. I am exactly where I am supposed to be, doing what I am supposed to be doing.

Is it just that easy to realize these things and then all of a sudden be able to change the way I feel? Certainly not. Growth is not linear. There is a season of growth and nurturing between the planting of seeds and the harvesting of the fruit. I am beginning to accept the fact that I am who I am, and that there is purpose in everything. There is perfect order in chaos. Wisdom without action has no effect. Compassion is active. The gift we have for each other is sharing. My compassionate act today is sharing these thoughts with you.

Ten Commandments for HepC Survival
Acceptance
Thoughts for the Family Members
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