Learning about Mental Wellness

CFFC’s Education Day 2022 lived up to it’s name; that is, we learned a lot about “Pursuing Mental Wellness.” If you missed our live program, or want to view it again, you can watch our recording of the event. Click here to replay Pursuing Mental Wellness.

We appreciate the financial support for Education Day provided by our sponsors Vivus (makers of Pancreaze) and Genentech (makers of Pulmozyme). Please watch their segments of the Education Day recording.

In the opening segment of the program, “It’s okay to ask for help,” four adults living with CF shared their experiences. Leisha Cuddihy, Lauren Shea-Warner, Chris Kvam and Kori Tolbert Doherty (from her hospital bed) described their paths from realization through the search for relevant and effective sources of support. One of our attendees aptly captured the spirit of this segment: “I really appreciated all the candidness of the guest speakers and their willingness to share.”

The panelists’ narratives demonstrated one of the basic truths of life with CF: each individual’s experience is unique. That said, there was a lot of commonality in their stories. Although it took different forms, each version began with the self awareness that their mental well being was at risk. The route to appropriate support also varied, but there was a common theme: no one understands life with CF as well as someone else living with CF. We can’t do justice to this discussion here so we recommend you watch the Pursuing Mental Wellness recording.

Given the variability in circumstances, the good news is that a variety of support is available. The composition of our second panel, “Where do I find the help I need,” proved this point.

Amanda Healey is Social Media and Communications Director for Attain Health which is now staffed and operated by adults living with CF. The organization’s vision is tohelp individuals living with cystic fibrosis optimize their health through partnership and peer support.” As Amanda described, Attain Health facilitates peer engagement virtual groups organized around common interest categories.

Gillian Mocek, MSW, is a Community Support Specialist for the CF Peer Connect Team within the Cystic Fibrosis Foundation. The program is dedicated to the notion that “[n]o matter where you are in life — whether you’re a person with CF, parent, or caregiver — CF Peer Connect can connect you to a peer who has been through a similar situation.” As evident in the title, the program connects an individual seeking help with a mentor matched to the specific needs of the requester.

Stacey Smith, LMSW, is a social worker and Comprehensive Mental Health Coordinator at the URMC Complex Care Center which hosts the adult CF clinic in Rochester. Her role includes assessing mental health needs as part of clinic visits and referring individuals to the appropriate level of support ranging from counseling to long-term therapy.

The offer of support did not end with the event wrap up. Here are supplemental resources offered by our panelists.

Lauren recommended a few books she used to explore trauma’s affect on the body: Laurens Book List. She is also open to direct contact at [email protected] or via her Instagram handle @lsheawarner.

Apologizing for “med brain,” Kori sent us a few suggestions after the program concluded. She noted that her journey to self awareness was given a big boost by retreats at Shalom Mountain. She also shared a document written by Rachel Westlake, BCPA, Managing Director for Cycadian Health Advocacy – Finding_a_Therapist

Amanda encouraged anyone with questions about Attain Health to contact her directly at [email protected]. She also noted that you can apply directly to join an appropriate peer group at http://attainhealth.org/apply-now-1

Gillian also extended the offer to contact her directly at [email protected]. She also shared a couple of documents as quick references for Finding a Mental Health Professional_A Guide for the CF Community and Finding a Mental Health Professional_Insurance and Referral.

You can connect with Stacey Smith at the Complex Care Center, or reach out to her directly at [email protected]

We should also acknowledge the emcee work done by Karly Schuhart, CFFC’s president (and sibling of a person living with CF). In addition to the logistic duties, she coordinated the questions submitted to the panelists.

We are so grateful for the insights provided by our dynamic panelist. We encourage you to watch the Pursuing Mental Wellness recording more than once to absorb all the valuable observations and suggestions offered by our panelists. We also encourage you to share the link to the recording with your peers, family, friends and co-workers – we can all use heightened awareness about mental well being in life with CF. The link is complex by you can copy and paste: