Name: Bel

Age: 49

Location: Minnesota

Year diagnosed with PBC: 2009

My name is Bel and I am a university professor of geography and a tourism researcher who loves to teach and travel despite my primary biliary cholangitis (PBC). I was diagnosed with PBC back in 2009 and, unfortunately, I have since progressed to stage 4, which is the most advanced stage. I am currently waiting for a liver transplant, and in the meantime I’m focused on doing everything I can to live life to the fullest and be a great mother to my daughter.

Interview conducted in October 2016

Name: Bel

Age: 49

Location: Minnesota

Year diagnosed with PBC: 2009

My name is Bel and I am a university professor of geography and a tourism researcher who loves to teach and travel despite my primary biliary cholangitis (PBC). I was diagnosed with PBC back in 2009 and, unfortunately, I have since progressed to stage 4, which is the most advanced stage. I am currently waiting for a liver transplant, and in the meantime I’m focused on doing everything I can to live life to the fullest and be a great mother to my daughter.

Interview conducted in October 2016

This is my Story.

The reason I decided to share my story is because I want people to know that PBC affects Latinas too. I was born in the Dominican Republic, and even though I’ve lived many places around the world, I think my heritage is a strong part of who I am.

“[I]t’s the culture, you know? It’s the food, the music, the way that you raise your children, and that can never change.”

— Bel

When I first starting having symptoms of PBC, I went to a dermatologist for some itching I was feeling on my feet. When my blood work came back and she saw that my liver enzymes were high, I was referred to several doctors and was initially misdiagnosed with autoimmune hepatitis.

“I remember why I hated my first doctor so much—the misdiagnosis doctor—…because he looked at me…and he said, ‘You did a lot of drinking when you were young.’ I said, ‘I don’t even know the taste of beer!’...He said, ‘…how much drugs did you do?’ I said, ‘I’m a professor. Professors are like the most boring breed you can come across.’”

— Bel

That doctor treated me like a number, not a person, and I decided I needed a new doctor. I was finally given the correct diagnosis after 3 years and 2 liver biopsies. I might not be a medical doctor (MD), but I do my homework, and I think it is really important to fight for yourself when you need to.

“[I]f you don’t take a proactive choice in taking care of your illness and what you have, [some] MDs tend to dismiss you…. [W]ith invisible illness: just because they cannot see it, it doesn’t exist.”

— Bel

Since then, I’ve traveled far and wide to get treatment that I think is right for me, and I am careful to do everything in my power to keep my health a top priority. In the summers I lecture on cruise ships, and I learned early on how important it is to prepare in advance and make sure I always have the medicines I will need for the whole trip. Working on a cruise ship is ideal because the salt air relaxes me, and since I give only a lecture or two a day, I can get the rest I need to help me deal with my fatigue.

“I think one of the worst parts with PBC is the fatigue. People, including your family and your employers, don’t understand. They think you’re tired, you’re lazy…. I have fatigue at 7 AM before I even get off my bed. I am so tired that I literally cannot move.”

— Bel

Unfortunately, I also have what my doctor calls “intractable” pruritus, which means that I feel itchy 24/7. Sometimes it gets so bad that I feel like I want to scratch all the way down to my bones. Pruritus this severe is rare and it’s horrible. I belong to a PBC group that has 5000 members, and I only know of 3 people who have this kind of pruritus. And even beyond the physical discomfort, there is social stigma attached to this symptom that makes me want to hide from the world.

“I don’t want to go out anymore with my friends or strangers because I cannot control my itch…. [Some] people associate the itch with dirty people. If you’re itching, it’s because you’re homeless, and you didn’t shower, or you didn’t wash your hair.”

— Bel

I feel like I’ve had a lot of bad luck in my life, and a lot of challenges to overcome. But I am a fighter, and I am doing everything I can so that I can be there for my daughter for as long as possible. I’ve survived a difficult divorce, worked hard to get tenure position at my university, and now I am focused on doing whatever I can to fight my PBC. It’s been a rocky road, but I still see a silver lining.

“When you have something this awful, you also realize who your friends are, who is your family. You realize who matters because they are the only ones that care.”

— Bel