When someone asks me why I am so tired all the time, I take the time to explain that I have a rare, chronic autoimmune disease that is slowly destroying my liver. This statement usually elicits further interest and gives me an opportunity to talk about liver disease and specifically about the liver disease that I have, PBC or Primary Biliary Cholangitis.
Often, people equate being tired and having fatigue. Anyone who has PBC and suffers from fatigue knows this difference. How to explain it to someone who knows little or nothing about the liver and its over 100 functions. Being tired means I’m sleepy or didn’t get enough sleep last night. Being fatigued means I feel like I am dragging myself through wet cement, for miles. Doctors don’t know why we have such debilitating fatigue but experts describe it as the worst fatigue of any disease and specifically worse than any other liver disease. Perhaps it’s because the liver performs dozens of things every single day and when it’s damaged from PBC, it takes away our energy so it can keep on functioning despite the disease. That’s just my opinion of course but I’ve been battling fatigue for 15 years, the kind of fatigue that leave me utterly spoonless.
The Spoon Theory is one person’s attempt to explain the kind of fatigue that one woman has (not PBC related) to her friend over lunch. You can read more at butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/. Christine has lupus and anyone who has it knows what fatigue is. And yet, PBC fatigue seems worse. Don’t get me wrong, this is not competition, just my reality, as well as the majority of PBC patients.
Given that the majority of PBC patients suffer from fatigue, why isn’t more being done to find meaningful treatment? Because it’s a quality of life issue.
Another symptom of PBC is puritius (intense itching). It’s the kind of itch that makes the PBC patients I know want to rip their skin off. I can relate. I have severe puritus along with my severe debilitating fatigue. There is research underway for a better treatment for pruritus. Because puritus can result in skin injuries, infection and disrupts sleep (its usually worse at night), it is a specific symptom that warrants additional therapies.
Thankfully, there’s hope on the near horizon.
I live in a state of hope. By choice. Every day is a gift. Every day is a bright new day.