Location: England
Year diagnosed with PBC: 2012

My name is Wendy, and I live in Nottingham in England. Between work, volunteering, and taking care of my kids, I lead a very full life. And I am living with primary biliary cirrhosis.*

*Interview conducted in July 2014, before the widespread adoption of the term "primary biliary cholangitis."

This is my story.

I spent 5 years searching for the reason behind the symptoms I was feeling. It all started with a bad bout of the flu and then years of feeling extremely tired. I could go to bed, sleep 10 hours, and I would still feel tired in the morning.

Besides feeling exhausted for no reason, I also struggled with several other symptoms. I went to several doctors and even got incorrectly diagnosed twice. Then I finally got diagnosed with PBC.

“I just felt like the doctors didn’t believe me. [They said,] ‘You’ve got 2 young children, you’re rushing around, you’re working, you’re running a household.’ ... But [the fatigue] is something more than that; it’s definitely something more than that.”— Wendy

At first, I was relieved to get a diagnosis because I finally knew what was causing all my symptoms. But once I had time to process the news, I started to get scared. It felt like there was no hope because there was no cure. But my doctor told me there was a medicine I could take, and he put me in touch with a PBC group so I could talk to others who have the disease. Connecting with others who have PBC has been really helpful for me.

Now I’m focused on staying active and doing what I can to treat my PBC. I get a lot of support from my son and daughter and from the people in my PBC group, and I am looking forward to the future.

“It’s great to have the lifeline—to ring each other up and say, ‘You know what? ... I’m not sure how I’m going to get through this day.’ And then, just to have that other person on the phone that’s saying, ‘...you know, I felt like that last week and...you can get through it.’”— Wendy

All participating parties, including patients, physicians, and experts, were compensated by ICPT.


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