Recently I joined an online support group on FB for people with liver disease and cirrhosis.
It’s been 3 years since my diagnosis and I’ve yet to meet anyone like me.
I envisioned a similar experience to our online support for people with lung cancer but I was very wrong.

While the name of the group generally matched my personal diagnosis, I learned quickly that I was a rare unicorn. Most members were patients who had histories of drug and alcohol use. Many others had Hepatitis C or suffered from obesity or a combination of all. While those patients were welcomed with open arms- I felt less supported.

I found that I was defining myself as drug, alcohol and hep C free. My liver disease was genetic due to metabolic syndrome and was autoimmune. It was not caused by obesity or a history of fatty liver disease. My posts were not responded to as well as others. Was there no one that could relate to what I was going through?

Then it occurred to me that this online group was not inclusive the way my lung cancer support community was. On the LCSC we normally do not discuss how someone got lung cancer or their past medical history. We discuss the disease itself, how someone was diagnosed, their treatment options/history and the feelings associated with living with the disease or caring for someone with it.

In that FB support group for liver disease, every conversation began with why and how someone got liver disease and cirrhosis. People joked about being able to drink again once they got a new liver via transplant. They joked about side effects of Lactulos and dismissed people’s fears and uncertainties.

I stayed in that online support group just long enough to realize how spectacular and unique our lung cancer community is.

Then I clicked on “Leave Group” and never looked back.

I have been living with and surviving liver disease and autoimmune conditions for over 3 years and I still struggle with acceptance.

My brain (self admitted OCD, Type-A) will have some great ideas, goals and aspirations while my body laughs out hysterically in pain....not today brain, my body says.

I’m an over-achiever. I finish other people’s thoughts and I’m great at reaching goals and setting higher ones. I never sit still. I will have every dish washed before I’ve finished cooking the meal. While others nap, I’m rearranging furniture or crafting jewelry or writing a book. I don’t stop. I never have. Until now.

There are days when my feet feel like I’m waking on broken glass. There are times that I swell and every muscle and joint in my body hurts. There are times that I have blood sugar issues, high ammonia or GI issues. There is no cure and there are no pain medicines that I can take to help me because of my liver disease- so I have to stop...and I have to rest.

Rest. I’ve always equated that word with laziness. People who rest are sick or lazy and I have never been either...until now. In between activities, I need to rest. Activity filled weekends are now time to rest and reenergize if I want to keep problems at bay and continue to live well.

But Its hard. This is not the me I know. My brain fights with my body. While I am laying down watching a random Christmas show on the Hallmark channel, my brain is thinking about all the places I could be and all the things I could be doing.

It’s a huge internal struggle. Do I get used to what this is now, or do I hold out for the me I used to be?


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