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 the Lung Cancer Support Community (LCSC) is. 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.