As with other chronic conditions, it’s common for people with primary biliary cholangitis (PBC) to feel like they’re losing a sense of who they were before they were diagnosed. That’s because our identities are often tied to the roles we play—at work, at home, and in our relationships. Adjusting to the reality of life with PBC can trigger feelings of grief and even guilt.
Considering this profound change, plus the stress of managing PBC on top of your day-to-day, you may feel overwhelmed, or experience feelings of depression or sadness or other mood disorders. And yet, mental health is often overlooked in people with autoimmune diseases.
In fact, a study recently found that even though more than 50% of people with an autoimmune disorder have feelings of depression or anxiety, many are never screened for either of these conditions. Some signs of depression can include:
Feeling hopeless, restless, irritable, or easily frustrated
Less interest or pleasure in hobbies and other activities
Ongoing sad or “vacant” moods
Struggling to concentrate or make decisions
Memory problems
The good news is that help is out there. Experts say it’s important for people to realize that they are not alone in experiencing these types of symptoms—and to tell their doctors so they can get support.
On the American Liver Foundation website, the previous moderator of Life with PBC: An American Liver Foundation Support Group on Facebook, quoted a post from that group: “‘PBC can be a lonely disease, as most people don’t understand it.’ That’s so true. Few people have even heard of the disease, and those who have, rarely understand what it means to live with PBC.” She also stated that even though living with PBC can sometimes be a struggle, members of the Facebook group continue to do interesting things: “We live life! We are brave!”
We live life! We are brave!
The moderator of Life with PBC: An American Liver Foundation Support Group on Facebook
Specific groups are a great way to get support for PBC. Here are some other ways to support your mental health:
Consult with mental health professionals, like counselors, therapists, and psychiatrists, to develop coping techniques and address emotional challenges. Consider telehealth appointments that can save you time and travel costs.
- Try to incorporate stress-reducing techniques like yoga, meditation, and mindfulness.
- Seek support from loved ones, friends, and other support groups, where you can share your experiences and express your feelings.
- Learn as much as you can about your condition, so you can better understand the potential effects of PBC on your mental health.
Consider services like BetterHelp and Talkspace for therapy and counseling, or apps like Headspace or Sanvello for meditation and more. These services do require fees and may not take insurance.
It’s important to realize that mental health is an important part of your overall PBC care and that the variety of services and professionals available to you can provide practical ways to live a more balanced life.
Of course, if you are seeking care, inform your primary doctor about all of your medications, including dietary supplements and over-the-counter or alternative products. This is important to help prevent multiple medications from interacting with one another.
To find more support for PBC, the American Liver Foundation offers a variety of resources, while the PBCers Organization is a place to find support specifically for people with PBC and their family members and friends. Their website includes links to their social media platforms as well as local groups.
