What People Wish Their Loved Ones Knew About Living With PBC
Living with a health condition can be challenging to explain to loved ones, especially when it’s a rare disease like Primary Biliary Cholangitis (PBC). PBC is a progressive autoimmune disease that targets the bile ducts in the liver, leading to gradual liver damage over time.
Talking about symptoms like fatigue and itching may seem straightforward, but living with a health condition is about more than what you can read in a list of symptoms. If you’re navigating life with a rare disease and feel that those around you don’t fully understand, remember that your loved ones care deeply and want to support you. Sometimes, understanding what it’s truly like to live with PBC takes time.
If you’d like to learn more about what it’s like to live with PBC, here’s what loved ones need to know:
Finding a Good Care Team Takes Time
Each person’s journey to a PBC diagnosis is different. For many, receiving a diagnosis involves more than a quick visit to their primary care physician—it can be a long, exhaustive process. Building a health care team might even require travel, especially for those in rural areas. It’s a challenging path, but it’s necessary to get the specialized care and support they need.
“Easy” Tasks Use a Lot More Energy Than You Think
Fatigue in PBC is overwhelming and goes beyond feeling “tired.” It’s a profound exhaustion that can linger, no matter how much rest they get. In fact, 60% of individuals with PBC report fatigue as a major symptom. This makes everyday tasks—like washing dishes, doing laundry, or grocery shopping—exhausting. While it may be tempting to say, “I’m tired too,” it’s important to recognize that their fatigue is more intense and constant.
PBC Affects More Than Physical Health
Living with PBC isn’t just a physical challenge; it takes a toll on mental health as well. Because PBC is progressive, treatments focus on slowing the disease rather than curing it. This can lead to high levels of stress and anxiety, with over 50% of people with PBC reporting these feelings. The burden of managing chronic symptoms and the emotional weight of an uncertain future can be isolating. Just listening without trying to “fix” things can mean a lot.
Physical Appearance Doesn’t Tell the Whole Story
Many people with PBC don’t “look sick,” which can lead to misunderstandings. Even if they seem okay on the outside, significant challenges may be happening within. It’s essential to remember that appearance doesn’t always reflect what’s really going on inside.
My Liver Problems Are Not Due to Alcohol
There’s a misconception that liver disease must be caused by alcohol abuse. However, PBC and many other liver diseases aren’t related to alcohol. PBC is an autoimmune disease that may be influenced by genetics and environmental factors, not by drinking habits. This misunderstanding can be frustrating, but understanding this distinction helps break down the stigma people with PBC often face.
The Need for Patience and Understanding
Living with PBC may mean canceling plans at the last minute or needing to take things slower. Patience and empathy from loved ones are invaluable and allow them to better manage their energy. Your understanding makes a big difference in their life.
If You or a Loved One Has PBC, Know You’re Not Alone
Adjusting to a new diagnosis and living with a progressive condition like PBC is hard. But there’s a community and people who want to support you on your journey. Sometimes, they just need time to truly understand what you’re going through.