Living with PBC: “You’re the Healthiest Looking Sick Person I Know”

When a friend commented, "You're the healthiest-looking sick person I know," it occurred to me that many people have no idea how serious primary biliary cholangitis (PBC) is. It's wonderful that my friends and family believe I look good and seem very healthy, but it makes me feel like they really don't understand the possible consequences of the disease.

PBC can often be a "silent" disease

My gastroenterologist shocked me 22 years ago by saying that the good news is it's a very slow-moving disease, but the bad news is I would probably need a liver transplant by the time I was 70. I'm now 74 and have been virtually asymptomatic all these years. That is probably one reason friends and family think I'm so healthy.

Most of my friends and family know I've had PBC for many years. People say, "But you look great, you travel, you bike, you play golf, you swim, and you scuba dive. You're so active it's hard to believe you have such a severe autoimmune disease."

The truth is that PBC is often a "silent" disease. Most people feel completely fine in the early stages. So many times, as with me, it is found by chance through blood tests done for other reasons.

My general practitioner did blood work to monitor my type 2 diabetes and high cholesterol. The results shocked us both in that I had abnormally high liver enzymes, particularly high alkaline phosphatase (ALP), and a positive antimitochondrial antibody (AMA) test. He immediately referred me to a gastroenterologist who confirmed I had PBC.

Feeling guilty that I have not had symptoms

I told my gastroenterologist that I felt fine with no symptoms at all. I proceeded to do extensive research into the disease. Many patients reported extreme fatigue, some saying it disrupted their daily lives, often leading to being forced to take disability because it was so difficult to function.

I had no itch, but many said their itching made it difficult to sleep, and it was with them constantly. I feel so fortunate that I haven't experienced those symptoms, but I often feel guilty, wondering why I have been so fortunate.

When people think alcohol is behind my PBC

Back when I was first diagnosed with PBC, it was called primary biliary cirrhosis. The word "cirrhosis" seemed to prompt an immediate and negative reaction. Many friends and family would say, "You sure were a heavy drinker, but gosh, you're so healthy, why don't you look sick?"

I often wonder if they thought I should look gaunt and sickly or have a yellow cast to my skin and eyes. This would often anger me because in truth, PBC had little, if anything, to do with alcohol. I was compelled to explain that it really had nothing to do with alcohol and is an autoimmune disease that slowly destroys my bile ducts and liver.

What I wish people would say

After the name change from cirrhosis to cholangitis, the negative comments seemed to have lessened. When I decline a cocktail or a beer at a party, I simply say I have a chronic liver disease and I'm trying to protect my liver. But some friends still say, "Come on, you look as healthy as an ox, one or two drinks won't hurt you."

I would rather have them say, "I understand you're just trying to do what's best for your health," and drop the subject. It is especially difficult when friends who understand what the disease is still think it is okay to serve me wine or alcohol because I don't appear sick.

Setting boundaries and prioritizing my health

Even though I have been asymptomatic, my gastroenterologist and I agree it is important to be hypervigilant to keep the disease and the symptoms at bay. I have been on treatment for PBC, made dietary changes, and stayed active. At 74, I believe it is important for everyone to keep moving.