When It’s Bad News

By J. E. Barbour

 

 

            “Your biopsy came back abnormal and the Doctor would like to see you as soon as possible.” These words caught me so off-guard that at first, I thought the nurse on the phone was speaking a foreign language. I had not anticipated anything out of the ordinary coming from the liver biopsy. After all, the ultra sound and Hida-scan had been normal. Some part of my brain seemed to immediately shut down and I could not comprehend the words she had just spoken to me. Consequently, I asked her to repeat what she had just said several times before I began to recognize and understand what she was saying. Something was wrong.

I hadn’t felt “right” in over a year and the fatigue and malaise were getting worse. I suspected I might be going through some kind of chemical imbalance or maybe even early menopause. At least I could take pills for those. Instead, my doctor explained that the biopsy showed that I have an incurable, untreatable liver disease called NASH (Non-Alcoholic-Steatohepatitis). He explained that NASH is a disease that does damage to the liver on a cellular level, causing scarring (fibrosis) leading to cirrhosis, which could be fatal. NASH is not contagious like other forms of hepatitis. There are no early warning signs to detect it. It’s not yet known what causes it and there are no medications to suppress it.  My doctor and I discussed some simple life style and diet changes that could hopefully reverse some of the liver damage. Then we made a plan of action for routine follow up exams to keep an eye on the progression of the disease.

A few months have now passed since that initial diagnosis and I’ve learned quite a lot about NASH, how to live with it, and hopefully how to survive it. My outlook is very optimistic but I’ve gone through several stages to reach this point. I’ve also learned through talking with others who have been diagnosed with serious illnesses, some fatal and some not, that they too went through similar stages to reach one of acceptance and support.

Disbelief and Confusion

            This was definitely the first stage I went though and it began as soon as the nurse said the word, “abnormal.” It physically felt as if someone had just placed a bucket over my head and pushed me off the edge of a cliff. My pulse quickened and my ears begin to ring and I really lost all comprehension of what ever she said after that word. I can remember hanging up the phone and standing there in my living room, frozen like a statue, trying to understand what she meant by abnormal. When the confusion subsided, the disbelief quickly set in and I knew the biopsy had to be wrong. I wanted to see the test results for myself. I wanted a second opinion.

Fear

             I had never heard of NASH and knew absolutely nothing about liver diseases, but I did know the meaning of the words incurable and untreatable. To me, these words were cancer. They were death. Fear set in upon my follow up visit with the doctor. He had a name for my illness but not enough answers, and the few answers he did have were not the ones I wanted to hear. During this stage, I became desperate to find others who had been diagnosed with NASH. I wanted to know if they were dying from this disease. I feared that I might be.

The Pity Party

            Poor, unfortunate me… I have a disease that no one understands. I have a disease that people are dying from. I have a disease that I might die from. I just wanted to stay in bed with the covers pulled over my head and pretend none of this was happening. The more I learned about NASH, the grimmer the outcome looked. By the time I reached this stage, I’d found the others; a NASH support group was on the Internet. Then I thought, “Wow, this really IS bad if it has its own support group.” If I wasn’t depressed before, I was now. I’d discovered the proof I’d hoped not to find…people were really dying of this disease, people my age, people who’d only known they had NASH for a few years. Now what was I going to do, pull the covers up tighter?

Anger

            After learning more about NASH through the Internet and the support group, some of the fear began to lessen, however, a new emotion emerged. Anger. I felt angry that my own body had turned on me. I felt angry that there was not enough known about NASH and that my own doctor, a Liver Specialist, couldn’t even give me adequate information. I was angry at the Universe and all the powers within for letting me down. And, I was pretty pissed off at God too. How could he let something like this happen to someone like me? What had I done wrong? Was I being punished? I thought only alcoholics got liver diseases. This was just great. All those times of ordering the “non-alcoholic” drink and what did I get? A “non-alcoholic” liver disease! I wanted to stay angry forever. I thought in some way this would help me fight the disease, but all it did was make me even more tired than before. I also was not a very pleasant person to be around. My friends and family grew tired of this stage long before I did.

Acceptance and Support

            It was through my involvement with the other NASH-ers in the support group that I finally reached the acceptance stage. Here, I had found others like myself. They were newly diagnosed and also going through the various stages of  “bad news.” We shared health histories and lab report data, horror stories about ignorant doctors and botched biopsies, but most important of all we shared our personal concerns and our fears. We bonded like family. I also met a few who’d lived with NASH going on 5 years or more. Many of these “old timers” in the group have more serious problems than just NASH. They also have Diabetes, Hemochromotosis (Iron Overload), Esophageal Hemorrhaging, Portal Hypertension and some are already in the final stages of cirrhosis awaiting liver transplants. These veteran members of the group have become my mentors. They are a wealth of information and support. They are the teachers, the leaders, the spokesmen, The Survivors. Through these brave souls, I am learning to accept the facts about NASH, dispel any unfounded fears and add my strength to the collective good of group. I am learning from them how to provide acceptance and support to those who may still be in disbelief, fear, self-pity, or anger.

            I don’t know what stage may be next, if there is another stage to come, or maybe if I’ll end up repeating some of the previous stages, but I do know that by exploring and dissecting my own personal feelings of “when it’s bad news”, I am stronger, I am wiser, and I will now be better prepared to help someone else when they are told, “Your biopsy came back abnormal.”

 

 

 

 

 

 

 

 

For more information on Non-Alcoholic-Steatohepatitis, you can check out the NASH support group at: [email protected]