Life with PBC can be a lonely journey. It’s common for people to feel isolated, frightened and overwhelmed after they’ve been diagnosed with the disease and when they experience new symptoms or setbacks. If you feel this way, the PBC community has your back.
Using social media, phone calls and in-person meetings, people with PBC are sharing challenges, seeking advice about everything from diets to medications, and finding doctors who specialize in the disease.
With a growing body of research finding that there are health benefits to peer communities, it may be time to check out the peer-to-peer resources below.
One in four people with a chronic condition has gone online to connect with someone who has similar health issues, the Pew Research Center reported. As human beings, it’s in our nature to turn to others for advice and support. The internet has made this infinitely easier.
Sometimes it’s the little things that build bonds. As one woman in a PBC Facebook group explained, “I used to scuff my feet on the carpet and found that it relieved the itching. It turned out that other people did the same thing. It was great to be able to go online and get confirmation that I wasn’t alone.”
Turning to an online support group is different than turning to Dr. Google. In the best situations, you’ll discover how others with the same condition are managing their disease. Still, people should be careful about what they read. Even when someone posts accurate information about their health experience, it may not apply to your own.
If you are looking for an online community, consider one hosted by a trusted organization. Two popular PBC Facebook Groups are:
The PBCers Yahoo group, PBC Daily Digest, also enables people to pose questions and get answers via email. The questions are answered by others living with PBC They provide information about their individual experiences and not medical advice.
Interacting the old-fashioned way—face-to-face—has many benefits, according to Carol Roberts, who manages a list of support groups on the PBCers Organization’s website.
“Some people don’t want to share their personal information on the internet,” said Roberts. “Also, in-person meetings can provide an extra level of reassurance.” Sometimes it takes a friendly face to put you on track.
Julie Jones, who coordinates an Austin Texas PBC support group, shares the story of a woman who received a PBC diagnosis with little information or direction from her doctor. When she then read about PBC on the internet, she became quite frightened. She had a vacation coming up and wondered if she should cancel her plans.
The situation that Jones explains is not uncommon. If a person is already scared, the patient accounts that jump out at them online can be examples of the worst case scenarios. A simple phone call with Jones helped this newly diagnosed individual realize that her situation was not as dire as it first seemed. “She become much more at ease and at peace with her diagnosis, after meeting other PBCers, who are living active lives,” said Jones.
Jones is proud of the positive impact the Austin group is having. While members support each other emotionally, they also offer practical information and referrals. “We currently have six or seven people in the support group who go to the same doctor,” said Jones. “When someone in the group finds a doctor they like, who is knowledgeable about PBC, the group hears about it. We also now have some doctors’ offices referring PBC patients to our support group.”
If you are not a “group” person, another option is to connect with one of the American Liver Foundation’s PBC peer-to-peer volunteers. They have been certified by NASPA to provide peer-to-peer education and support. You can speak with them just once, or as often as once per week. Just call ALF’s toll-free National Helpline at 1-800-Go-LIVER to be matched with a peer.
Jess Schnur, one of the peer-to-peer volunteers, explains that she and her colleagues can provide a range of assistance by phone or email. “We can help you think through questions to ask at your next doctor’s appointment or explain lab tests. We can be a shoulder to lean on or an ear to listen. We’ve been there,” said Schnur.
Having been there is exactly what makes peer-to-peer support so valuable. “Friends and family don’t fully understand what we’re going through. You need people who get it. You need peers.”
Last updated on July 12th, 2022 at 12:54 pm