Navigating Stigma and Misconceptions About PBC

My name is Jackeline Candelario. I am 49 years old, and my journey with primary biliary cholangitis (PBC) started officially on May 12, 2021.

Being diagnosed with PBC has been one of the most challenging things I have had to deal with in my life. This life-changing event turned my life upside down. I did not know how things were going to change for myself, my family, and most importantly, my quality of life.

I had so many questions and concerns for my future that I found it impossible to manage all of these emotions at the same time. So much was already taking place in my life before the diagnosis. This disease - and navigating misconceptions people had about it - added another level of stress that I did not see coming at all.

This is a disease of hidden battles

My message for those who are dealing with PBC is simple but very important: this is a disease of hidden battles and mistaken identities.

This is a battle I did not sign up to fight. But nevertheless, here I am each day trying to fight the good fight. Each day comes with a new set of challenges.

Alcohol or lifestyle choices did not cause this disease

For me, life has not been perfect since the diagnosis, and I do not expect it to be in any way, shape, or form.

When most people hear the words “liver disease,” they immediately think of lifestyle choices and wonder if alcohol consumption or diet was the cause of the problem. This couldn’t be further from the truth. But there were so many misconceptions about PBC and what I was dealing with at the time.

I had to learn for myself and then explain to my family and friends what PBC was and how lifestyle choices did not cause this disease.

The reality of PBC

As we all know, PBC is a chronic autoimmune condition where the body’s own immune system mistakenly attacks the small bile ducts within the liver.

When I learned that there was nothing that I did to cause my PBC, it brought some peace of mind. But I still had to constantly explain the condition to others who were not familiar with it.

It is not a consequence of behavior; it is a biological glitch that mostly affects women, often diagnosed in the prime of their lives.

The emotional toll of navigating stigma

Because the organ affected is the liver, there is a persistent stigma that we must navigate.

As a PBC patient, I have so many things to worry about. That includes the fear of being judged silently or the need to constantly explain that this illness is not my fault.

This extra emotional labor only adds to the physical burden of the disease and is also mentally exhausting. This is something no patient needs to add to the list of other things they must deal with.

PBC is like managing a lifelong marathon

When you meet someone with PBC, you must understand that they are managing a lifelong marathon.

They are balancing medication schedules, frequent blood tests, and constant monitoring of their liver health to prevent progression to more serious stages like cirrhosis.

They are doing all of this while trying to maintain their roles as parents, partners, and professionals.