32:38 Nia: As we start to wrap up our conversation, I want to talk about something that's been on my mind throughout our discussion—how people can reframe their relationship with a PSC diagnosis in a way that's empowering rather than defeating.
32:51 Jackson: That's such an important topic, Nia. I think one of the most profound shifts I see in patients who thrive with PSC is moving from asking "Why me?" to asking "What now?" It's not about denying the seriousness of the diagnosis, but rather channeling energy toward what can be controlled and influenced.
33:09 Nia: I love that distinction. It seems like there's a difference between acceptance and resignation.
0:49 Jackson: Exactly. Acceptance means acknowledging the reality of PSC while still maintaining agency over how you respond to it. Resignation is giving up. I've seen people with PSC go back to school, start new businesses, travel the world, and accomplish incredible things. The diagnosis doesn't have to define the limits of what's possible.
33:36 Nia: What role does hope play in all of this? Because I imagine there's a balance between staying hopeful and being realistic.
33:42 Jackson: Hope is crucial, but it needs to be grounded in reality. False hope—like believing PSC will just go away—isn't helpful. But realistic hope—hope that treatments will improve, that you'll have good years ahead, that you can live meaningfully with this condition—that kind of hope is both accurate and sustaining.
34:00 Nia: I'm thinking about how this diagnosis might actually clarify what's truly important to someone. Have you seen that happen?
34:07 Jackson: All the time. Many people tell me that PSC, while unwanted, helped them prioritize what really matters. They stop sweating small stuff, invest more deeply in relationships, and pursue things they're passionate about. It's like having a chronic illness strips away a lot of the noise and helps focus on what's essential.
34:25 Nia: That reminds me of something we discussed earlier about finding meaning and purpose. Can you talk more about how people discover that?
34:32 Jackson: Some people become advocates, working to raise awareness or fund research. Others find meaning in mentoring newly diagnosed patients. Some use their experience to deepen spiritual practices or strengthen family bonds. The key is that meaning isn't imposed from outside—it emerges from how individuals choose to respond to their circumstances.
34:51 Nia: What about the concept of post-traumatic growth? Can a chronic illness diagnosis actually lead to positive psychological changes?
1:12 Jackson: Absolutely. Research shows that many people with chronic illnesses report increased appreciation for life, stronger relationships, greater personal strength, and deeper spirituality. It's not that the illness itself is good, but that humans have remarkable capacity to find growth even in difficult circumstances.
35:16 Nia: How do people navigate the relationship between planning for the future while living fully in the present?
35:21 Jackson: That's one of the most challenging aspects of living with PSC. I encourage people to make reasonable preparations—financial planning, advance directives, building strong medical relationships—but not to let future possibilities rob them of present joy. It's about being prepared but not preoccupied.
35:37 Nia: What about the impact on identity? How do people maintain a sense of self that's not completely defined by having PSC?
35:44 Jackson: This is so important. PSC is something you have, not something you are. I encourage people to continue pursuing interests, maintaining roles that are important to them, and developing aspects of themselves that have nothing to do with their diagnosis. You're still a parent, professional, artist, athlete—whatever roles matter to you.
36:02 Nia: How do people handle the well-meaning but sometimes unhelpful advice from others?
36:07 Jackson: Oh, this is a big one! Everyone becomes a medical expert when you have a chronic illness. People suggest everything from miracle cures to dramatic lifestyle changes. I tell patients to thank people for caring while maintaining boundaries about your treatment decisions. You don't owe anyone an explanation for following your doctor's advice rather than their suggestions.
36:25 Nia: What about dealing with the unpredictability we've discussed? How do people make peace with not knowing what's coming?
36:31 Jackson: Learning to live with uncertainty is a skill that can be developed. Mindfulness practices, focusing on what can be controlled today, and building resilience through strong support systems all help. Some people find it helpful to have multiple scenarios planned—best case, worst case, and most likely case—so they feel prepared for different possibilities.
36:49 Nia: As we think about our listeners who might be newly diagnosed or supporting someone with PSC, what's the most important message you'd want them to take away?
36:57 Jackson: That PSC is serious but manageable, unpredictable but not hopeless. Every person's journey is different, and many people live full, meaningful lives for decades after diagnosis. The key is building a strong medical team, taking care of yourself, staying connected to what matters most, and remaining open to the possibility that life can still be beautiful even with this challenge.
37:17 Nia: And for our listeners who don't have PSC but want to be better friends, family members, or colleagues to someone who does?
37:24 Jackson: Listen more than you speak. Believe them when they say they're tired or not feeling well, even if they look fine. Be flexible with plans because symptoms can be unpredictable. Don't try to fix everything, but do show up consistently. And remember that having a chronic illness doesn't make someone fragile—they're still the same person you've always known.
37:41 Nia: Jackson, this has been such an enlightening conversation. I feel like we've covered so much ground—from the basic science of PSC to the deeply human aspects of living with uncertainty. For our listeners who want to learn more or connect with resources, where should they start?
37:55 Jackson: PSC Partners Seeking a Cure is an excellent starting point—they have comprehensive information, support resources, and research updates. The American Liver Foundation also has good educational materials. And don't hesitate to reach out to liver centers at major medical institutions for specialized care.
38:10 Nia: Before we close, I want to acknowledge something. To anyone listening who has PSC or loves someone who does—this journey isn't one you have to walk alone. There are resources, there are people who understand, and there are reasons for hope. Thank you so much, Jackson, for sharing your expertise and helping us understand this complex condition.
38:27 Jackson: Thank you, Nia. And to our listeners, remember that knowledge is power, community is healing, and every day you choose to engage fully with life despite PSC is an act of courage. Keep asking questions, keep connecting with others, and keep believing in the possibility of good days ahead.
38:43 Nia: That's a perfect note to end on. Thanks for joining us today, everyone. If this episode resonated with you, we'd love to hear your thoughts and experiences. Until next time, take care of yourselves and each other.
