Book Review

Embedding humanity and hope in the pediatric chronic pain journey

Chronic Pain as You’ve Never Heard It Before

The Comfort Ability Program Peer Advisory Board. (2022). [Audio podcast]. Link

Reviewed by Jennifer Ramasami

printable version (PDF)

The podcast series Chronic Pain as You’ve Never Heard It Before is a relatable and engaging discussion on pediatric chronic pain with a focus on recovery and hope. Created and produced by the Peer Advisory Board of the Comfort Ability Program, this series centers the voices of patients with four main speakers – Sophia, Brooke, Fiona, and Bridget – along with Dr. Rachael Coakley, pediatric psychologist at Boston Children’s Hospital and creator of the Comfort Ability Program. Chronic Pain as You’ve Never Heard It Before has created a space to both educate and connect with multiple audiences, from individuals with chronic pain, to their families, and to the healthcare professionals who serve this population as well.

The first episode provides an introduction to chronic pain treatment with a metaphor of a tricycle stuck in the mud with all its tires deflated; this is an individual with chronic pain. In order to re-inflate the tires or improve function, a three-pronged approach is needed in treatment, specifically medical, physical, and psychological interventions. The importance of a multidisciplinary, biopsychosocial approach for chronic pain treatment is reiterated throughout the series and is in line with the current research on effective treatments for pediatric chronic pain (Miró et al., 2017).

This episode continues with the podcasters sharing stories of their respective chronic pain journeys. At the outset of their segment, they acknowledge that while they emphasize the hopeful aspects of their journey, it was still challenging and imperfect. Further, they recognize that their stories are not representative of all peoples’ experiences with chronic pain. A focus of this episode is the podcasters’ shared experience of how pain came to take over their lives and how, after rehabilitation and treatment, they were able to take their lives back. One podcaster relates it to driving a car; initially pain was driving the car, and after receiving intervention and learning effective coping skills, pain now takes a backseat, no longer in control. The skills learned on their chronic pain journeys have also proven to be helpful overall life skills. For example, the podcasters noted that many of the relaxation and coping skills (e.g. diaphragmatic breathing, short walks) for pain have also been effective in managing stress and mood. Sharing how they use skills in their everyday lives highlights the multitude of benefits chronic pain treatment can have. Further, a critical theme in the episode is gratitude, even for their experience with chronic pain. They view chronic pain as something that helped them learn valuable life lessons and take a more holistic view on life, focusing more on their goals and what’s important to them.

Each subsequent episode covers a specific theme related to chronic pain and treatment:

• Engaging in cognitive behavioral therapy through the Comfort Ability Program
• Addressing common chronic pain myths
• How to cope with daily chronic pain
• Chronic pain and school
• How to talk about chronic pain

During Episode 2, Fiona is joined by Dr. Coakley to discuss The Comfort Ability Program’s 1-day workshop, Fiona’s own experience in the program, and to provide listeners with an experiential component at the end. Fiona shares how she felt a sense of community in the workshop being surrounded by others who shared similar lived experiences. At the end of this episode, Dr. Coakley leads listeners in a guided imagery exercise, one of the relaxation skills taught in the Comfort Ability workshop. This allows the audience to get an inside peek into how skills are learned and practiced during the workshop. It also serves as another way the audience can engage with the content presented in the podcast.

During the next episode Sophia, Brooke, and Bridget have a conversation with Dr. Coakley and Dr. Bobbie Riley, an anesthesiologist, pediatric pain physician, and the director of the Chronic Pediatric Pain Service at Boston Children’s Hospital to “bust myths about chronic pain”. This episode feels like it is one of the most vital in terms of sharing important information about common misconceptions regarding chronic pain. The speakers describe unique aspects of chronic pain while conveying that it is a treatable condition. Additionally, they address one of the most common myths children and teens have heard about their pain – it’s all in your head. Dr. Coakley does an excellent job describing the brain-body connection using compelling metaphors. The podcasters are sincere and open about their own struggles with some of these myths, adding a layer of relatability to this episode that can help normalize the struggle many individuals with chronic pain face in working through these common misconceptions.

The fourth episode covers daily coping with chronic pain. Again, these podcasters continue to approach conversations with authenticity, as observed from the beginning of the conversation in which they talk about their initial dislike, skepticism and the challenges they faced implementing coping strategies. They present questions that are commonly asked by individuals with chronic pain - How could these lifestyle changes and coping skills help with my pain? How can I just scale back when I have so much to do? They describe their frustration with coping skills not be a quick fix but requiring time and consistency to demonstrate its effectiveness. The speakers provide motivation by relating how when they fully committed to the process and started being consistent in applying strategies such as mindfulness, pacing, and healthy sleep habits, they started to see change. Beyond learning these skills, they recognize the importance of being in tune with their bodies and understanding the balance between activity and rest.

In the final episodes, the podcasters discuss pain and school and healthy ways to talk about pain. Academics and school attendance are some of the biggest problems youth with chronic pain and their families struggle with (Logan et al., 2008; Murray et al., 2020). One of the podcasters emphasizes this point, stating that she simply did not try to handle school because she did not believe she could attend with her pain being so all-encompassing. Another stated she had the opposite experience in which she attended daily, but was masking her pain and struggling each day. In both cases, neither one was actively addressing their pain nor how to cope with it effectively during school. They go on to describe the coping tools they eventually did implement after going through pain rehabilitation treatment. Through the lens of their own experience the podcasters offer some useful strategies and accommodations that can help youth with pain function in the school environment.

Episode six flows nicely from the previous episode with its focus on talking to others about chronic pain. School is one of many spaces individuals with chronic pain have to navigate pain conversations; questions about chronic pain come up in most areas of their life. The podcasters discuss how they approach telling their story, respond to questions from family members about their pain, and talk with friends and peers about their pain. They describe strategies they used to de-center pain and re-center their focus on other preferred areas of conversation. They also noticed that, over time, they became more comfortable discussing their pain and did not feel as distressed by these conversations. Talking about it in positive ways, like reflecting on their progress throughout the years in their pain journey, were productive conversations. This episode provides insightful thoughts on why people in pain often talk about it, why a conversational focus on pain can be unhelpful, and how to approach pain conversations in a more constructive manner.

One shortcoming of the podcast, acknowledged in the first episode, is the lack of diversity within the storytellers of this podcast, as all four main contributors are White cisgender women. Hearing about chronic pain experiences from a more diverse population would add another valuable layer of content to the information and stories being shared in this series. In addition to this restricted perspective, at times the themes, stories, or language within and across episodes was a bit repetitive. However, the repetition can serve as a means to reinforce some of the most vital messages from this podcast – chronic pain treatment is multifaceted, coping strategies work if you commit to them, and ultimately, there is a life beyond pain. Further, themes that are repeated within the podcasters’ stories underscore their shared experiences. The challenges presented in this series are not new to youth with chronic pain. These stories are common, and yet people going through these hardships often feel isolated and alone. These podcasters demonstrate that there are others experiencing similar issues and that no one is truly alone in their struggle. While their messages are similar to many that clinicians convey to their pediatric pain patients, the voices of young people who have personally experienced chronic pain may be particularly compelling for some youth facing chronic pain experience. To summarize, Chronic Pain as You’ve Never Heard It Before provides an accessible avenue to teach others about chronic pain and effective treatment strategies from the perspectives of individuals who have lived experience with this condition. Their stories are intertwined throughout the content of the podcast to help highlight the challenges as well as the rewards that come with recovering from chronic pain and reclaiming one’s life.

Cite as: Ramasami J. Embedding humanity and hope in the pediatric chronic pain journey. Podcast review: Chronic Pain as You’ve Never Heard It Before. Pediatric Pain Letter 2023;25(1):1-3. ppl.childpain.org

References

Miró J, McGrath P J, Finley GA, Walco GA. Pediatric chronic pain programs: current and ideal practice. Pain rep 2017;2:e613. PubMed Abstract

Logan DE, Simons LE, Stein MJ, Chastain L. School impairment in adolescents with chronic pain. J Pain 2008;9:407-416. PubMed Abstract

Murray CB, Groenewald CB, de la Vega R, Palermo TM. Long-term impact of adolescent chronic pain on young adult educational, vocational, and social outcomes. Pain 2020;161:439-445. PubMed Abstract