Pancreatitis & Mental Health: What You Should Know
PART 1
Living with pancreatitis can be hard in many levels. The pain, the unpredictability, the health system and insurance challenges, multiple appointments, lack of awareness and expertise, the dietary restrictions, the moments where you have to cancel plans or explain yourself for the hundredth time — it adds up. And all of that takes a toll that goes far beyond the physical.
Research shows that people living with recurrent acute and chronic pancreatitis are 5 to 7 times more likely to experience anxiety and depression than the general population. Yet the emotional side of this disease is still one of the least talked-about parts of the patient experience. And you, our community have brought up this concern to us in many interactions.
We heard you. That’s why we created a new video series: Pancreatitis & Mental Health: What You Should Know.
In part 1, trauma-informed trainer and facilitator Julie Wells walks through the foundations of mental health and pancreatitis, including what connection exists between the two and what you can do to care for your emotional well-being on a day to day basis with small, achievable practical steps toward better tomorrow.
Topics covered:
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The role of mental health in overall health
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How pancreatitis impacts your emotional well-being
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Emotional regulation: what it is and how to use it
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How past experiences shape our responses under stress
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How to better understand and meet your emotional needs
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Crisis support resources
Part 2 is coming soon. Subscribe to our YouTube channel so you don’t miss it.
Free Tools to Support You
Alongside this video series, we’re sharing three free toolkits we collaboratively developed with Give an Hour for the pancreatitis community. You can use these on your own, at your own pace, let them support you in your mental health journey.
Self-Regulation Tool
A practical guide to help you notice what you’re feeling, identify what triggered it, and pause before responding. This is a structured 6-week exercise but, you don’t have to use the whole tool at once; even practicing one step, like naming what you’re feeling after a difficult appointment, can help you understand your reactions and decide what to do next.
Emotion Tracker
A simple tool to help you build awareness of your emotional patterns over time. Use it daily, weekly, or just when something stands out. Over time, it can help you notice patterns earlier, so you can seek help before things feel overwhelming. It can also be a useful way to open conversations about how you’ve been feeling with people you trust.
My Support System
A structured way to think through who you currently rely on, what kind of support they provide, and where you might need more. You can start by identifying just one or two people you feel comfortable reaching out to. The goal is to help you recognize that you don’t have to navigate this alone, and to build a more intentional support system around you over time.
Why This Matters
Mental health is part of being human, just like physical health; everyone has it, and it changes over time depending on what we’re going through.
When you’re living with pancreatitis, the emotional weight can be significant. The uncertainty. The grief. The exhaustion of advocating for yourself in medical settings. The fear of the next flare. The isolation that comes when your body limits what you can do and where you can go.
And for parents and caregivers of people with pancreatitis, the emotional burden is real, too. Research across rare and chronic diseases consistently shows significant mental health impacts on caregivers, especially those caring for children who may not have the words to describe what they’re experiencing.
We also know that mental health directly influences how we experience pain, how we manage symptoms, and how we engage with care. When emotional needs go unaddressed, living with a chronic condition becomes even harder.
This isn’t about adding more to your plate. It’s about recognizing that taking care of your mental health is part of taking care of yourself, and that small, intentional steps can make a real difference over time.
Our Expert Speaker
You're Not Alone
One of the hardest parts of pancreatitis is how isolating it can feel. Finding people who understand, really understand, makes a difference.
If you’re looking for community, here are a few places to start:
- Mission: Community to End Pancreatitis : our Facebook group for patients, families, and caregivers
- Genetic Pancreatitis Community Groups: Facebook groups for people with hereditary pancreatitis
- HealthUnlocked — Mission: Cure hosts a Pancreatitis Support community
If You're in Crisis
If you’re feeling distressed or having thoughts of harming yourself, please reach out for support.
- In the U.S.: Call or text 988 (Suicide & Crisis Lifeline), available 24/7
- Outside the U.S.: Please contact your local emergency services or crisis support line. Findahelpline.com has information for international support lines
You matter. Your life is valuable. And it’s okay to ask for help.
References
Depping, M. K., & Knauer, K. (2020). Mental health challenges in rare diseases: A neglected dimension. Frontiers in Psychiatry, 11, 626. https://doi.org/10.3389/fpsyt.2020.00626
European Organisation for Rare Diseases (EURORDIS). (2022). Juggling care and daily life: The balancing act of rare disease caregivers. EURORDIS Rare Barometer Survey. https://download.eurordis.org/documents/pdf
Gustafsson, C., & Olsen, R. (2018). Parenting a child with a rare disease: A phenomenological study of the diagnostic journey. Journal of Pediatric Nursing, 42, 1–8. https://doi.org/10.1016/j.pedn.2018.06.003
National Center for Advancing Translational Sciences (NCATS). (2023). Rare diseases fact sheet. U.S. Department of Health and Human Services. https://rarediseases.info.nih.gov/about
National Organization for Rare Disorders (NORD). (2024). About rare diseases: Definition and key statistics. https://rarediseases.org/rare-diseases
Pfeiffer, P. N., & Shapiro, J. (2021). Narrative medicine in rare disease
National Organization for Rare Disorders (NORD). (2024). Rare disease mental health report: Barriers, burden, and the path forward: https://rarediseases.org/rare-disease-mental-health-report
https://uihc.org/health-topics/how-your-mental-health-affects-your-physical-health-and-why-matters-work
Keep Learning
Mission: Cure offers a growing library of free webinars, short form videos, blog posts, and tools to help people living with chronic or recurrent pancreatitis manage symptoms, reduce pain, and improve quality of life.
Check out our other resources featuring experts in pain management, nutrition, mental health, and more!
