“Invisible illness really can be isolating. It can feel like nobody understands,” says Anahli Patel, PsyD, an assistant professor of clinical medicine at Indiana University School of Medicine in Indianapolis and a volunteer for the American Liver Foundation (ALF). Constantly explaining symptoms or pushing through activities that have become harder can lead to anxiety, frustration, and withdrawal. “A lot of people turn inward,” she says.
Over time, social isolation, ongoing symptoms, and even hormonal changes associated with liver disease can affect mood and even contribute to depression, Dr. Patel says. But there are things you can do to cope with symptoms, maintain social connections, and support your mental and emotional well-being if you’re living with PBC:
1. Find Ways to Communicate How You’re Feeling
With PBC, symptoms often come and go, which means some days you may feel fine, and others you may need extra help from family, friends, or neighbors. Finding clear ways to communicate what you’re experiencing can make it easier for others to understand and support you.
“If it feels difficult to explain how you’re feeling, sometimes it’s easier to give examples,” says Patel. For instance, you might explain that brain fog makes grocery shopping difficult, because it’s hard to remember what you need, which can lead to frustration and worsening symptoms. “Giving specific examples can help your care team understand where some of those limitations might be,” she says.
Another helpful strategy is using a scale to rate how you’re functioning each day, says Patel. For example, a 10 might mean you can’t get out of bed and need significant help. A five could mean you’re okay at home by yourself but would benefit from a call to check in. Sharing this kind of scale with your loved ones can make it easier to convey what kind of support you need on any given day. You can also use it to communicate with your medical team about how you’re feeling.
2. Stay on Top of Treatment
Managing PBC isn’t just about your liver. Keeping up with treatment and monitoring can also help reduce anxiety and give you a greater sense of control over your health. You might feel that symptoms are unpredictable, but you do have the ability to support liver health and promote your overall well-being.
The main goals of PBC treatment are to slow disease progression and protect liver function, which can also bring peace of mind. Your doctor will likely monitor how well treatment is working with blood tests that measure:
- Alkaline phosphatase (ALP), an enzyme mostly found in the liver
- Bilirubin, which is found in the bile the liver produces
Common medications used to treat PBC include ursodeoxycholic acid (UCDA or ursodiol; Actigall, Reltone, Urso), seladelpar (Livdelzi), and elafibranor (Iqirvo), says K. Gautham Reddy, MD, a professor of medicine and associate chief of gastroenterology, hepatology, and nutrition at University of Chicago Medicine. These drugs help keep levels of ALP and bilirubin within target ranges, which can ease symptoms such as itching and provide reassurance that your liver is being supported.
“Even if you have symptoms, the fact that your alkaline phosphatase and bilirubin are better is a very good thing,” says Dr. Reddy.
When ALP and bilirubin levels are within your individual target range, the risk of serious complications — such as cirrhosis, the need for a transplant, or liver-related death — drops significantly and approaches that of the general population, he says, which may ease your mind.
Attending regular checkups with your doctor is important, as people with PBC are at higher risk of developing other conditions, such as autoimmune thyroid disease, bone loss, and a vitamin D deficiency, says Reddy. Routine monitoring can help your care team catch and manage these issues early, supporting both your physical health and emotional well-being by lessening uncertainty and stress about the condition.
3. Implement Strategies to Ease Symptoms
Finding different ways to keep yourself as comfortable as possible isn’t just about easing physical symptoms. It can also reduce stress and improve your emotional health with PBC. For example, if you’re dealing with dry, itchy skin, small changes to your skin-care routine can make a meaningful difference. Reddy recommends taking short, lukewarm baths or showers, not hot ones, which can dry your skin and make itchiness worse. He also recommends using petroleum jelly–based moisturizer and running a humidifier if the air in your home is dry to further help with irritation and give you relief and a sense of control.
You can also manage other symptoms with simple measures. For instance, chewing gum or sucking on a mint can provide short-term relief for dry mouth, and artificial-tear eye drops may help ease dry eye, says Patel. Small actions like this can help you feel more comfortable and less stressed throughout the day.
It’s also important to ask your doctor about specific medications that may help. Reddy says seladelpar is approved to help reduce itching in people with PBC, and a newer class of drugs, known as IBAT inhibitors, is expected to be available soon to help manage itching related to liver disease, offering another way to manage symptoms and improve your quality of life.
4. Practice Healthy Habits
Fatigue from PBC can take a big toll on not just your body, but also your mental health. Taking care of yourself by practicing healthy habits can energize you and help you feel more in control of your well-being.
Reddy recommends eating a well-balanced diet that includes plenty of fruits, vegetables, and lean protein to fuel your body and support a positive mindset.
It might feel difficult to get up and move when you’re fatigued, but regular physical activity can help boost your energy over time and improve mood. “If you’re starting out at just five minutes a few times a day, getting your heart rate up can make a difference. And you can build from there,” he says. Small, achievable steps like these can also help reduce stress and reinforce a sense of accomplishment.
If you feel unsure about exercising, consider working with a physical therapist for guidance and support. Patel notes that having an expert’s help can make you feel more confident and comfortable being active, which strengthens both your physical health and emotional resilience.
5. Manage Your Social Energy Levels
Although your social life may not look the same as it did before PBC, staying connected with others can help boost your mood and overall well-being.
Patel suggests thinking about your energy as a bank account. If you make too many withdrawals during the day, you might not have much energy left later on. In other words, pacing yourself is important. Try planning less strenuous activities, building in rest time beforehand, or spacing out plans, so you don’t overexert yourself.
Balancing activity with rest can help you stay socially engaged but still protect your energy. Adjusting that balance based on how you’re feeling can help you participate in the moments that matter most to you.
6. Try Mindfulness Exercises
Another way to add to your energy stores is to calm your mind and body with mindfulness practices, such as progressive muscle relaxation, meditation, and diaphragmatic breathing.
If you’re new to mindfulness, searching for guided meditations or breathing exercises on platforms such as YouTube can be a good start. Try a few styles to help decide which techniques you enjoy and make you feel calm and rested.
7. Seek Additional Support
Your family and friends may want to help you as you manage PBC, but they may never truly understand what you’re experiencing. That’s why it can be helpful to seek additional support from those who are truly familiar with the challenges of PBC.
The ALF offers several online support groups for people with liver disease, including a Facebook group specifically for people with PBC. The organization also has a helpline you can reach by calling 800-465-4837 between 9 a.m. and 5:00 pm. Eastern time to get answers to questions, as well as resources and information about liver disease.
If you prefer in-person connections, you can ask your doctor if there’s a local support group they recommend.
You may also want to consider seeking professional support from a mental health practitioner. Patel recommends searching directories such as the one at Psychology Today to find a therapist near you who meets your needs. In some cases, doctors may prescribe antidepressants to help manage mood and related symptoms, even if you don’t meet the criteria for clinical depression or anxiety.
“PBC is a very all-encompassing disease,” says Patel. “It affects all of your biological processes, including your appetite and sleep. It’s important to find ways to take control of the things we can.
The Takeaway
- PBC can involve challenging symptoms, such as fatigue, itching, and brain fog, that can affect both your physical and emotional health.
- Stay on top of treatment, use strategies to manage symptoms, and communicate clearly with your doctor about how things are going to help protect your liver while promoting a sense of control over your health and boosting your overall well-being.
- To help you maintain your quality of life while managing PBC, practice healthy habits, pace your energy output, practice mindfulness, and seek support.