Living with a rare disease diagnosis can feel overwhelming in ways that go far beyond the physical symptoms. The uncertainty, constant decision-making, and sense of isolation that often accompany rare conditions can take a heavy toll on mental and emotional well-being. Patients, caregivers, and families may find themselves juggling not only medical needs, but also feelings of stress, grief, anxiety, or burnout.
Caring for mental health is just as important as caring for physical health. Making space to process emotions, connect with others who understand, and seek supportive resources can ease the burden and help build resilience over time. No one should feel like they have to navigate these challenges alone.
This page was created to support the mental and emotional side of living with PFIC. Here you’ll find resources, perspectives, and opportunities for connection that aim to help you feel seen, supported, and better equipped to care for your whole self.
Private Support Sessions
If you need support but are unable or reluctant to join a group, you can also schedule a one-on-one Zoom support session with our facilitator, Lisa Jensen. These support sessions are NOT therapy, but they are a space in which to express feelings, share your experiences, receive emotional support, and explore the ways in which you can draw on your own unique strengths to help you better cope with PFIC-related challenges.
If you are interested in a free private support session, please contact mentalhealthsupport@pfic.org.
Lisa Jensen has a Masters Degree in Counseling Psychology and personal experience with chronic illness.
How are you connected to PFIC?
My friend’s daughter has PFIC.
Where are you located?
On a farm just outside of Lexington, KY.
What do you hope to accomplish?
I hope to help build an active and thriving support group—one in which all members feel safe, heard, understood, and valued. Living with a rare disease or loving someone with a rare disease can be overwhelming and isolating. There is so much empathy, wisdom, knowledge, and experience within the PFIC community, though. My hope is to create a space in which members can turn toward one another, draw upon these strengths, and heal together.
What skills do you bring to the PFIC Network?
I care about people, have a passion for mental health, and value meaningful connection. In addition to having a Masters Degree in Counseling Psychology, I have firsthand experience in living with a debilitating chronic illness. I created an online community for my fellow Covid-19 long-haulers, where I have both witnessed and felt the healing that comes from being part of a group that deeply understands what you are going through.
What would you sing at karaoke night?
Probably “Landslide,” since I can actually hit the high notes—at least on a good day!
Kids Club
Kids Club is a virtual gathering of teens and tweens on WhatsApp and Zoom. WhatsApp is a free messaging app that allows participants to share text-based messages, pictures, and emojis within a group. The Kids Club WhatsApp group is a closed group, meaning that participants must be added by a group admin. This helps protect kids from spammers, scammers, and other unsavory types. If you would like to take further steps to protect your child’s privacy on WhatsApp, you can learn about parental controls here. Lisa Crompton (PFIC Network Program Associate, as well as a PFIC parent) and Lisa Jensen (Support Group Facilitator) will be group admins, along with teen volunteer extraordinaire, Cadence Crompton. There are no hard and fast age rules for WhatsApp, so if you feel that your child is mature enough to benefit from participating in casual group conversations with other kids with PFIC, then we hope to see them there!
Please contact us if your child would like to be added to the group!
Check out our Mental Health blog post series:
Pruritus Resources
by Lisa Jensen PFIC pulls a host of challenges in its wake. The waves are…
It’s Okay To Feel This Way:
Navigating Emotions as a PFIC Parent By Lisa Jensen In Rare Siblings, we wrote that…
Rare Siblings
By: Lisa Jensen, PFIC Network Support Group Facilitator When one family member receives a diagnosis…
Deciding In The Dark
By Lisa Jensen Navigating a rare disease can feel like traversing a dark and unfamiliar…
Mental Health Webinars
Mental Health: Coping Strategies for the Patient and Caregiver
2020 Virtual PFIC Conference Session
From a fairytale family to losing three brothers, maternal advocate and Angel Aid founder Cristol Barrett O’Loughlin draws on personal tragedy to ease the suffering hearts of others. Her inspiring stories of courageous #RareMothers reveal the secrets to sustainable self-care and wellness. Forget “PTSD” — more accurate is “CTSD” (Chronic Traumatic Stress) — as our rare community grapples with the realities of long-term caregiving and disease management. There is a purpose to our pain. With guided meditations and her signature infectious enthusiasm, Cristol gently nudges us all to move beyond “Why me?” into “What can I do to help others and to help myself?
Rare & Resilient: A New Perspective on Coping With Pruritus
Rare and Resilient is a 5-part webinar series held in honor of Rare Disease Month 2023 to address one of the most challenging problems facing PFIC patients and their families: the itch and how to better manage it. This series examines itch from a mental health perspective and looks at evidence-based interventions for chronic itch. While these videos are centered around the specific issue of pruritus, many of the coping skills and strategies are also applicable to other life challenges.
