Patients Speak Out About Living With PBC

13 SEPTEMBER 2020

We asked dozens of individuals with PBC what it means to live successfully with this condition, and we’re pleased to share a few of their answers below.

“Living successfully with PBC is to accept the initial diagnosis and to find a doctor knowledgeable in this disease. Keeping up with labs, scans and endoscopies are critical in your routine care. Don’t look too far ahead when first diagnosed. Enjoy each day as best you can.”

“PBC is an extremely lonely and misunderstood disease. I plug into support and educational resources to help minimize the isolation. Living successfully means finding a posse – possibly through an online PBC Group — to help empower you to overcome family members’, friends’ and colleagues’ ignorance of PBC. This will lead to healthier and more supportive relationships, that can be the KEY to rise above the loneliness.”

“I have been dealing with itching for several years. I didn’t know it was related to liver disease. I have found that a 45 min Epsom salt bath 2x a week does wonders. I still itch, but nowhere near as intensely. I have had extreme fatigue. I just thought it was part of menopause. I had got sad and felt old, like my best years were behind me. My doctor. gave me Urso about 2 weeks ago. It was like I woke up. My energy level feels more like normal. I have been dealing with some nausea and stomach upset, but mild symptoms. I have been doing a lot of reading about the condition, but I don’t feel like I have a clear vision of what to expect, yet. I guess to live successfully with PBC, you have to be open to continually learning and trying new things.”

“I guess living successfully is just staying positive and accepting what comes my way. Doing what I can to help myself and relying on God to manage the rest. I’m not dead yet, and I believe a smile can change the world. I’ll be smiling for a while.”

“Living successfully with PBC is spending as much time as possible with my family and staying active. I also just joined this online support group and it is already helping with answers to some of my questions and hopefully helping others. I just wish there was more knowledge and cure for the disease.”

“I am newly diagnosed and there is so much information to be an informed patient/person. I am a nurse and find it hard to move forward without understanding this disease. I try each day to set a goal for the day or week.”

“Living successfully with PBC. How does anyone actually do this? I am so new to this disease it seems to me that there should be some education that comes along with the diagnosis. What does it mean to each of us? Prognosis? Will I need a transplant? The Doctors just throw some medication at you without knowing how it will affect you and no explanation of the disease. I am so thankful for the Life with PBC Facebook Group and the internet to be able to learn more and that I am not alone.”

“Awareness is huge, fatigue hits hard and limits quality of life, more research $$$, educated doctors…would help me live more successfully with PBC.”

“Living successfully for me is…having a doctor with training on treatment thus decreasing my anxiety and symptoms so that I can perform the tasks that I need to be a spouse, mother, sister, aunt and friend. Not missing important life events because I’m tied to a bathroom or am too weak.”

“What helps me the most…following a healthy diet, plenty of rest, low stress and taking medication on a schedule. Also, having someone understand the high and lows of this disease.”

“Successfully living with PBC means to be proactive. Realize that what works for one person may not work for you, but knowledge is never ending. Diet helps me live successfully and keeping in mind how food choice plays an important role in feeling good.”

“Living successfully with PBC includes having a medical team that is willing and able to support us and help us adapt our lives to be better able to have enough energy to do more than just exist. Personally, I have adjusted my work days (thanks to a letter from my hepatologist) to be consistent 8 hour days instead of 10 to 12 hours like they used to be. I work in the mornings (7-3) so I am home before I hit the proverbial wall. I have come to terms with my limitations, and try not to beat myself up when my house isn’t clean like I kept it before I got sick. I think it would help a lot of my fellow PBCers live more successfully if they didn’t have to worry about how they are going to pay for their medications every month. I don’t know what else can realistically be done to make life with PBC better for all of us. All of our journeys are different and we all face our own unique challenges.”

“What does living successfully with PBC mean to me? My husband has taken over all of my household duties so that I can just sleep all the time because my fatigue is so life altering.”

“Living successfully with any chronic disease means having the ability to take care of yourself. Tests, medications and Dr. visits all cost money and insurance doesn’t cover what it used to. The financial burden of a chronic illness can be stressful. It would be nice if someone could take that off the plate. We already have to deal with symptoms and conditions we didn’t ask for. I know that I sometimes feel guilty for using family resources on myself.”

“Living successfully with PBC means being able to plan for a family vacation each year. I can’t do all the things that I used to because of fatigue. But I try to find ways to do the most important.”

Learn more about Primary Biliary Cholangitis, including diagnosis, treatment, and support, by visiting our PBC Disease Information Page.