“PBC can be a lonely disease, as most people don’t understand it,” wrote a member of the American Liver Foundation’s Facebook group.  That’s so true.  Few people have even heard of the disease, and those who have heard of it, rarely understand what it means to live with PBC.

So, I was grateful when ALF asked me to write this inaugural post for its PBC Blog.  I am delighted to have a chance to make sure the truth gets out about the challenges people with PBC face.  To prepare, I asked for advice and comments from my Facebook friends. Here’s what we wish people knew about PBC:

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I Might Not Look the Way That I Feel

Everyone likes a compliment. You can tell me that my cooking is world class, or my grandchildren are incredibly kind. But please think twice before you say to anyone with PBC: “But you look so good.”

Ouch.  These words can sting. Too often people assume that if they can’t see the symptoms, PBC doesn’t exist.

Some people living with PBC are lucky and experience few symptoms, but that doesn’t mean their disease isn’t progressing.  Others may experience abdominal pain, agonizing itching, swollen feet, and fatigue that never goes away—no matter how many hours they sleep. Medications are available that can help treat the condition, but the symptoms persist.

Holidays can be the hardest time.  My friend Colleen’s story may sound familiar. “I remember times when I had to skip important events because I was so exhausted.  Since my symptoms were invisible, friends, colleagues and family assumed that I was making up excuses,” she said.

If you are living with PBC, you know that this disease couldn’t be more real!

If you are close to someone with PBC, here is my advice. First, know that we are doing all we can to live our best lives. Second, when we show up at your event or attend a meeting, please do not comment on how we look. Just say you are glad to see us. We are glad to see you too.

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I Don’t Have PBC Because I Drink Too Much

One of the most common frustrations that people living with PBC cite in our Facebook Group is just how little others know about the complexities of liver disease.

“When I tell people that I have an autoimmune disease, they look interested even concerned.” Cathy explained. “But as soon as I mention that it’s a liver disease, the conversation shuts down.  I am pretty sure they are wondering if I am a secret drinker.”

It’s commonly assumed that all chronic liver diseases are caused by drinking too much alcohol. They’re not. No one knows what causes PBC; we do know that sometimes it runs in families.

As a person living with PBC, I think I can speak for all of us. When people incorrectly assume that alcohol causes PBC, we feel that you are blaming us for having this condition. You wouldn’t blame someone for having leukemia or breast cancer.

In fact, we really wish that people would stop stigmatizing all liver diseases whether they are alcohol-related, genetic or autoimmune. That is the only way that we will make progress in ending liver disease and caring for our loved ones.

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Sometimes We Clam Up, But We Still Need You

Life is complicated enough.  Those of us living with PBC understand that a chronic condition can make relationships even more challenging.

Too often, we lose friends and loved ones who don’t feel comfortable when we confide in them. Others won’t or can’t make accommodations for our changing needs. And we worry about those who do understand.  We don’t want to burden them!  So, we keep it all inside.  My friend, Liz, who has had more than two dozen chronic conditions, wrote the following:

Throughout my lifetime of a wide array of chronic diseases, I’ve shut a lot of people out…attempting to hide away, not disclosing much… or as one of my closest friends calls it ” clam-shelling.” I just want to say to those that refuse to give up on me, I am more grateful than you could ever know. For all my friends and family facing rough obstacles…. I think after 50 years I’ve finally come to understand the immense significance of allowing people to help you. If you have even one person in your corner fighting the fight for you when you don’t have the energy, strength and/or fortitude, you are one of the lucky ones, as am I.”

For those who care about someone with PBC, sometimes we need your patience.  Other times, we need your persistence.  If you don’t hear from us for a while, just keep trying.

If you are living with PBC, please join me on Facebook at Life With PBC: an American Liver Foundation Support Group.  You can also follow Twitter and other social media, to form friendships with other people with PBC who know what we’re going through.   There’s no need to be alone

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PBC is a Full-Time Job

In an ideal world, after being diagnosed with a chronic condition like PBC, you should be afforded extra time to take care of yourself.  In real life, the opposite is true. Precious time is often expended managing medical bills, arguing with insurance companies, and worrying about co-pays and other escalating health care costs. And that is just the start.

I have been fortunate to have had excellent doctors who have experience treating PBC, and I can’t say enough good things about the medical team that performed my transplant.  However, I know from speaking with others that the level of care is not equal everywhere.

Just last week, a woman posted in our Facebook group about a nurse practitioner who kept referring to the conditions as “PCB.”  This healthcare professional shared with her the very same PBC brochure that she had gotten at her previous medical visits.  I think we all can understand her frustration.

Beth, a longtime friend, summed it up best: “When you have PBC, you have to be your own best advocate. You need to learn everything you can about the disease because so few doctors really understand it.”

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I Am a Person, Not a Disease

A year ago, I traveled alone to Germany for three weeks to visit a lifelong friend. Last month, I started quilting again. The world is full of exciting new adventures.

I won’t lie.  We live with PBC 24/7.  Some days are “cry days.” But at our core, we are still very much the people who we were before the diagnosis. Athletes can still compete, and artists can still create.

A member of our Facebook group just tried out for a roller derby team. Another is in Europe, racing dragon boats. Still others work full-time jobs despite the itching and fatigue. We live life! We are brave!

I tell my friends with PBC that there are some things that we may no longer be able to do exactly as we did in the past. But don’t let the disease steal your identify.  Find ways to hold onto the hobbies and interests you enjoy. Remember to see beauty.

For our loved ones and supporters, it can be very scary loving someone with PBC. There are no cures for this serious disease.  But take a deep breath – and go cheer on your own dragon boat racer.