My Family Doesnt Understand Hepatitis C

My Family Doesnt Understand Hepatitis C 

Learning to live with cirrhosis takes a lot of effort. One of the first things I had to realize is that my family doesnt understand Hepatitis C. I knew very little in the beginning, and yet I had to explain it to my family members. It was mass confusion! How would I finally die? Living with so many symptoms left me weak and fatigued. Please try to keep your sense of humor to help your family relationships survive your diagnosis with the Hepatitis C Virus. 

My family was in shock. That first day, my sis offered to donate her liver – then we realized that everyone only has one. I got on the internet and read like crazy about transplants.   

The Blank Stare When Your Family Doesn’t Understand Hepatitis

We were all on a giant learning curve that was a slippery slide. I began trying to help my liver heal enough to take treatment. I was eating well, exercising, and getting mentally and financially prepared. It was all I thought about most days. Fighting liver failure takes a concentrated effort.

The alternative was to give up and die.

It can seem like our family does not care, or that when we try to talk about our side effects or symptoms, nobody listens.

We feel as though we are an inconvenience – a pain in the rear.  Family members just stare at us. I sometimes repeated the same things over and over because of hepatic encephalopathy.  I know they were staring at me, like WHAT?

The Whole Family Needs Help

Give them a break. Remember that they have to go through the stages of grief. They are dealing with their own strong emotions. Learning they have a family member  with liver disease can cause them to go into shock, denial, anger or bargaining. It’s a major life change for them. Have them read about Helping Someone with liver disease . 

I had many uncomfortable conversations with family members, especially during Hep C treatment. I got my feelings hurt and often wondered what they were really thinking. Play the game with me on what was said, and what I THOUGHT it translated to.  

Translate: What are they really thinking?

Me: I gave myself another Procrit shot for anemia. I sure hope they don’t reduce my Ribavirin dose.

Family Member: Well, good! I am sure you will be fine. Let me know if you need anything.

Translate: Really? She’s shooting up in her bathroom? How do I get out of this one?

Or This One:

Family Member: We’re cooking out this weekend. Want to come?

Me: I’m sick, and everything’s got too much sodium. Can I stay inside and nap on the couch if I get tired?

Translate: I hope she stays home. Poor thing looks pitiful.

I called my sis:

Me: I hurt all over. I just crawled to the bathroom and threw up. I laid in the floor for 20 minutes.

Family Member: Poor baby. I bought some new throw rugs last week. Do you need one?

Translate: I’ll bet that floor is a mess. I hope she doesn’t ask me to help her clean.

On this one, she actually offered to clean AND brought me a rug. xo Lisa

I felt so pitiful

Me: I wish this were all over and life was like it used to be.

Family Member:  Dead Silent Treatment

Translate: What the heck am I supposed to say to that?  

The truth is that our families have their own lives to lead. They are busy with their own kids, spouse, activities, and jobs. They care, but our situation is so ALL CONSUMING! It wears us out, not to mention our family. My family was as caring as they knew how to be, especially after I got liver cancer.

My Family Doesnt Understand Hepatitis C is a common problem that we all face.

It can make you feel like giving up. You do not even have to explain. We get it. We have become family and support to each other in this time of our health crisis.

Adam and Eve were the first dysfunctional family. My family put the FUN in dysfunctional.

I had a fb friend even add me as a family member recently. A new sister! Please consider me as more than a friend too. I am your bff and sis in the battle, xo Karen:)

Reach out to someone who DOES understand. A Hep C Group like This One is great. So it this one. A Hepatic Encephalopathy support group or forum can help. These friends become your “chosen” family during this time.

pics via hearingimpaired phones, plyvore.com