Learning to live with Hepatitis C or 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! I was afraid that Hepatitis C was going to kill me. I was trying to learn what the diagnosis meant for me physically. Living with so many symptoms left me weak and fatigued. That is not the best state to be in while trying to learn how to get well. You will have to keep the big picture in mind and keep your sense of humor to help your family relationships survive your diagnosis with the Hepatitis C Virus.
My family were in as much shock as I was. My sisters wondered if I would be able to get a transplant. That first day, my sis offered to give me hers – then we realized that everyone only has one and you have to have it to live. I got on the internet and read like crazy. I would take notes and then I try to talk about what I learned. I rambled just like I do in my blog. I got the blank stare from my family on more than one occasion. Heck, my own mind went blank quite often concerning Hepatitis C treatment.
We were all on a giant learning curve, but it seemed to be more of a slippery slide. I learned about treatment, and began to try and get my liver in good enough shape to be accepted to take the protease inhibitors when they were approved. I was consumed with eating well, exercising, and being 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. Many times when we try and discuss our side effects from treatment, or our symptoms, it seems like our words fall on deaf ears. Then I began to think: Maybe they don’t fall on deaf ears. Maybe they just have their own lives to live.
We feel as though we are an inconvenience. Well we are! We’re inconvenienced by the virus. We can feel like we are a pain in the rear actually. Family members just stare at us. Many times we are probably repeating something that they had already heard us say… five minutes before. Yes, I got caught in that loop more times than I can count.
We need to give them a break. Remember that they too have to go through the stages of grief. They are dealing with their own strong emotions. The shock at having a son or daughter with liver disease may cause them to go into shock, denial, anger or bargaining. The feelings of having a parent, sister, or brother whose life is filled with turmoil is a major life change for them. Ask them to read my blog about Helping Someone with Hepatitis C.
I had a lot of uncomfortable conversations with family members, especially during treatment. I was careful not to let my feelings get hurt. I tried humor, as always. I have always said that Adam and Eve were the first dysfunctional family. Your family and mine are just like the rest of the human race. We put the FUN in dysfunctional.
Try and see the humor in the situation. When I would begin one of my sad tired stories of what I felt like or what battle I was going through with treatment or side effects I would sometimes play out the “What are they really thinking” game. The look on their face said it all. So I would mentally translate it into what was probably going on inside their head. I am sure that you have had a few of those conversations. Do yours go something like this?
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?
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.
Family Member: We’re cooking out this weekend. Want to come?
Me: I can’t eat without gagging and it’s got too much sodium. Can I nap on the couch if I get tired?
Translate: I hope she stays home. Poor thing looks 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.
So when we are telling our family about Hepatitis C treatment, we would be wise to keep a few things in mind. Try and see the big picture.
1. They really don’t get it. They never can. They never will. What you are dealing with is so personal. No one but a Hepatitis C Best Friend really gets it.
2. Show them some mercy. Try and see it from their viewpoint by putting yourself in their position. Most likely you have learned how to give a lot more to others as a result of having the Hepatitis C Virus. They have never suffered like you are suffering. They just have not developed that capacity yet. Accept them for where they are and love them anyway.
3. Don’t expect more than they can give. They may not have the time, knowledge, or energy to take on your burdens. You do need a listening ear. If a family member cannot listen without becoming overwhelmed, let it be. You cannot force them to help you work through all of your stuff. Make an assessment of what they can give, and receive it on the level that they can give it.
4. Show them what you’re made of. My family always saw me as stubborn and bossy. I’m the oldest girl. I was the responsible one. I was also very determined. When I wanted to throw in the towel, instead I would hunker down and set my mind to do what had to be done. They were able to watch me take a sucker punch and come back swinging.
They are still family. You can pick your nose and you can pick your friends. But you can’t pick your friend’s nose. AND you can’t pick family. For better or worse, they are your family. You have a shared history and nobody knows you better than they do.
If your family already has a lot of conflict, your diagnosis may bring it out in the worst way. And at the worst time. Maybe your illness can be a starting point in a new direction. As they see you fighting the battle of your life to get rid of the Hepatitis C Virus, they may change their mind about you.
Your past family drama can be exchanged for a new scene where you are the hero or heroine of your own story. You can let go of the former roles that you used to play. You may also see family members in different roles. There is a lot of opportunity for change with Hepatitis C diagnosis and treatment. I know for a fact that YOU are changing. I hear it in your stories. Some of that change comes from accepting, and even embracing our family even if they do not understand Hepatitis C.
All of us Best Friends understand. 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. I had a fb friend even add me as a family member recently. I have a new sis. I hope you consider me as more than a friend too. I am your bff and sis in the battle, xo Karen:)
My Family Doesnt Understand Hepatitis C is a common problem that we all face. It can make you feel like giving up.
Reach out to someone who DOES understand. A support group or forum can become your “chosen” family during this time.
pics via hearingimpaired phones, plyvore.com