Many of us have memories and associations with each season—we may think of building snowmen in the winter, blooming flowers in the spring, sandy beaches in the summer, and college football in the fall. For us (Sam and Dr David), the fall season holds a different set of memories than most; as people living with inflammatory bowel disease (IBD) diagnosed during the fall season, our memories include our respective medical tests, the mixed feeling of relief and panic when formal diagnoses came, and the awareness that IBD is dynamic and is never “done.” As a college student living with IBD (Sam) and a pediatric IBD psychologist living with IBD (Dr David), the fall season is a yearly reminder of our past challenging medical experiences as well as the ongoing and evolving relationship to our diseases.
For Sam, October has always been a month of resurfacing anxieties, as bad news seemed to arrive like clockwork each year. Whether it was his initial diagnosis, frequent medication switches, or even having to attend senior homecoming the day after a liver biopsy, each October always seemed to bring something worse than the year before. However, with time, the month has become more of a reminder of how much progress he had witnessed in just a few years. For Dr David, each Jewish New Year (Rosh Hashanah) during the fall brings difficult memories of a newly diagnosed and ill 12-year-old version of herself who was scared and confused by a chronic illness diagnosis she could not even spell. And as the years pass, the sweetness of Rosh Hashanah marked by the traditional apples and honey is also more present in reflecting on how that 12-year-old version of herself would hopefully be proud of the person she is today. As discussed in work by Fuss and Lease,1 people with IBD can experience psychosocial impact of their disease even when in remission as they “wait for the other shoe to drop”; for us, this is especially true during each diagnostic anniversary milestone that passes. And so the act of living each day fully and in defiance of a complex and unpredictable illness like IBD takes, no pun intended, tremendous guts.
Many individuals with chronic health conditions navigate “what if” thoughts—what if I need to change my treatment, what if I do not feel well when the school year starts, what if I need to have surgery?—and yet not all individuals with chronic health conditions have clinical spaces to process these experiences over time. Moreover, the way a pediatric patient feels about their chronic illness diagnosis evolves over time; just like how our relationship with our caregivers is different at 5 years old than 15 years old, so too does our relationship with our chronic health conditions differ over time.
Pediatric patients with IBD are known to have higher psychosocial health needs, including increased anxiety, depression, fatigue, body image concerns, and disordered eating concerns, than healthy peers.2,3 However, there is currently notable variability in access to specialized gastrointestinal (GI)/IBD psychosocial care across the United States4 despite proposed medical home models of integrated and proactive psychosocial care.5 At our institution, we follow the IBD medical home model described by Michel and colleagues,5 which led to the authors meeting in routine clinical care during a multidisciplinary new IBD diagnosis clinic in 2020. Consequently, introducing the role of IBD Psychology and providing proactive, supportive, and evidence-based care was able to occur in a timely fashion, as was offering continuity of care as the coauthors formed and deepened their clinical relationship. Below we reflect on our experiences as individuals in a clinical relationship with disease concordance, while also highlighting that disease concordance is not a necessary ingredient to exploring and supporting a young person’s relationship to their chronic disease.
Sam’s Perspective
As someone who entered the complicated space of IBD after years of little to no health issues, it was extremely tough navigating the physical and psychological symptoms that were now an integral part of my everyday life. Stress as a result of continual medical struggles accompanied by consistent worries about potential issues down the road characterized my outlook for quite a while. Even when my inflammation, blood work, and overall symptoms were in a good place, I would find myself worrying about the next bad thing to come up.
Fortunately, I have been able to work through a lot of this with the help of Dr David, my pediatric GI physician, and the rest of my IBD team. Being able to receive clinical support that has been fully focused on IBD has made such a huge difference in my mental well-being as well as my overall approach to my health. Since I was initially diagnosed, I have had a plethora of resources available to me, including appointments with Dr David. Dr David’s stories and personal experiences with the illness have often served as a how-to guide for me, especially during times of confusion or stress. When I needed to switch to my fourth medication in 4 years, I came to her with a lot of questions and worries regarding my future with the illness. Instead of contributing to my panic or giving me false promises that everything would be ok, she attentively listened to my concerns and reminded me of everything that I had already overcome. The reassuring but also realistic presence that she has provided has made such a big difference in the way I mentally approach difficult times. Having someone like her who has been invested in my medical process from the beginning has been extremely valuable, and I believe it would prove to be equally beneficial for patients with other chronic illnesses. As a college psychology student, I hope to eventually enter the field and help others with IBD in the same way that Dr David has helped me.
Dr David’s Perspective
As described in a recent publication on the experiences of being a person diagnosed with IBD in childhood and a health care professional in pediatric IBD,6 there are various nuances and complexities to holding both roles including professional ethics, a clinician’s own comfort in disclosing, and if, when, and how disclosing has clinical utility for the patient. During graduate school and my residency, I grappled with if, when, and how to disclose, worried that sharing my own experiences may shift the spotlight from the patient to myself. I distinctly remember the first time I chose to disclose where a young person with IBD was expressing notable challenges integrating the diagnosis into their young life and how my heart was thudding when I carefully shared that I understood in my own life experience as I also lived with IBD; there was a moment of silence, and then the patient’s eyes got wide and their shoulders relaxed, and we were able to delve into a deep conversation with the spotlight focused on their experiences and my shared experience helping them to feel a little more comfortable in sharing their difficult thoughts and feelings. Being selective and thoughtful about disclosing—be it sharing about living with IBD, having undergone surgeries for my IBD, or that I am an ardent dog mom—is critical in working to build and maintain the clinical relationship within ethical and professional boundaries. When I disclose my IBD diagnosis to patients and families, it is sensitive though important to emphasize that living with IBD is an ongoing experience and not something to cleanly “get past”; stated differently, living with IBD is not running and finishing a singular marathon but rather endless, back-to-back marathons. My own relationship with my IBD evolves and morphs with each patient with IBD and family that I interact with; sometimes I can feel the emotional bruises where a patient’s experiences brush up against my own (like difficulty coping with severe anticipatory nausea before taking methotrexate injections) and times where I have empathy and curiosity when a patient is describing an IBD experience I have not personally experienced. Although having IBD is not a prerequisite to being a skilled GI psychologist who specializes in IBD, I do hope that there are nuances of the experiences of my patients with IBD that I can experientially appreciate given our shared experiences and the disease concordance can add to—not make—the clinical relationship.
I also find that disclosing my own diagnosis when there is a clinical utility for the patient (eg, feeling less alone) can add a special quality to the therapeutic rapport, a kind of shorthand that people may experience when they meet someone else who shares something meaningful in common and a willingness to be brave in talking about topics that can be socially stigmatized like GI symptoms. And yet, I continue to be reminded that disease concordance is far from required when I think back to my own pediatric psychologist who so importantly helped shape who I am today; she did not share my diagnosis, but she always listened with openness, nonjudgment, and empathy, and this led to developing a strong and warm clinical relationship.
For Sam and me, our disease concordance has contributed to thoughtful and philosophical discussions about Sam’s relationship with his IBD, including a gratitude that Sam has for his IBD and how IBD has positively shaped his sense of self. This, too, is something that deeply resonates with my own relationship with IBD and the appreciation for how IBD has been an important personal and professional force in my life.
Our reflections may feel saccharine but are sincere in offering the perspective about how truly listening (and continuing to listen) to another human managing chronic health needs matters, as well as how sharing (when comfortable and appropriate) can enrich the clinical relationship. As shared above, a clinician does not need to also have the same chronic illness as the patient to form deep, supportive relationships that provide the platform to explore a young person’s relationship with their disease over time.
Engaging in active, compassionate, and nonjudgmental conversations with warm body language (eg, leaning forward, nodding along) is a key place to begin for any clinician. Using skills like permission-seeking questions (eg, “Can I ask you more about that?”), reflective listening (eg, “Wow, that sounds like it was really hard when you learned your diagnosis.”), labeled praise (eg, “Thank you so much for your bravery in sharing; I learned a lot today.”), and normalization (eg, “That makes sense you felt scared during that medical test; many other kids feel like that too.”) are critical skills to reach for during these conversations. Asking—and continuing to ask—is paramount to holding space for these important discussions as patients grow and mature. When possible and available at a clinician’s institution, offering psychosocial services like pediatric psychology and helping to find a strong therapeutic rapport fit are highly encouraged. Having dedicated time to offer pediatric patients with IBD to reflect and process their ongoing relationships with IBD throughout pediatric care is essential and has been an essential resource in Dr David and Sam’s respective medical journeys. As a future psychologist (Sam) and a current psychologist (Dr David), we implore readers to use your human superpower of listening and connecting to your patients—just as we remember the kindness and attentiveness of our respective health care professionals, so too will your patients remember your willingness to be there for them.
Mr Peck and Dr David conceptualized, planned, wrote, and critically edited this manuscript. Both authors contributed equally to the resultant manuscript, approved the final manuscript as submitted, and agree to be accountable for all aspects of the work.
CONFLICT OF INTEREST DISCLOSURES: There are no conflicts of interests/disclosures for either author.
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