What Chronic Pain Looks Like When No One's Looking For It
Supporting Youth with Chronic Pain and Mental Health Needs
"She spent six months searching for an answer to her extreme pain. What stayed with her wasn't the diagnosis — it was this: 'I was never dismissed.'"
104628 The Clinician's Guide to Supporting Individuals With Chronic Pain & Co-Occurring Conditions
Chronic pain affects millions of people across the lifespan and can have a profound impact on physical health, emotional well-being, daily functioning, and overall quality of life. This webinar provides an overview of chronic pain, including current perspectives on the nature and derivation of pain, factors that contribute to its development and persistence, and the complex ways it affects individuals....
A young person in pain rarely comes labeled as such. There's no marker over their head signaling today's a ten and yesterday was a one, as Christina Marsack-Topolewski, PhD, LMSW, puts it.
Chronic pain in children and adolescents is, by its nature, invisible, which means the professionals most likely to encounter it often don't recognize it as the thing they're looking at. Marsack-Topolewski, a licensed clinical social worker, gerontologist, and associate professor of social work at Eastern Michigan University, has spent two decades working across K-12 and clinical settings with individuals experiencing chronic pain. As she describes it, despite that consistent overlap with her caseload, she is "rarely told" that a client is dealing with chronic pain — "in fact, nearly almost never."
The condition hides in plain sight, showing up instead as absences, shutdowns, anxiety, or behavior that looks like something else entirely.
What Pain Actually Is. And Isn't.
Before any discussion of intervention can happen, a handful of counterintuitive facts about pain itself need to be on the table.
Pain intensity does not correspond to tissue damage. As the International Association for the Study of Pain (IASP) defines it, pain is "an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage," a definition in which the emotional half isn't an add-on, but part of the core definition itself. That means mood, stress, and mental health aren't complications layered on top of "real" pain; they are, clinically, part of what pain is.
This has direct implications for chronic pain specifically. With chronic pain, the nervous system becomes more sensitive over time, meaning significant pain can occur even without any ongoing tissue damage. Reassuring test results, in other words, are good news about what isn't happening, but they don't make persistent pain disappear. Without a clear plan in place, families often cycle through round after round of testing, searching for an answer that may not exist in a scan. The more productive shift, in Marsack-Topolewski's framing, is pivoting the conversation "from finding the cause to building function," continuing to pursue answers where possible, while simultaneously helping a young person find ways to move forward regardless of whether one is found.
She illustrated this with a woman she'd spoken to recently, who had spent roughly six months searching for the source of extreme pain. What stood out from that conversation wasn't the diagnosis (there was, eventually, a physical cause), but a single line: "I was never dismissed." Providers helped her navigate the diagnostic search while simultaneously helping her build coping mechanisms and function, without waiting for an answer to arrive first.
The Conditions Behind the Curtain
Chronic pain in youth shows up under many names, some more visible in clinical training than others.
Headaches and migraines are among the most common, often intensifying during puberty and frequently co-occurring with stress, anxiety, and depression, a cluster that from a school-based perspective, tends to show up first as rising absences and reduced participation. Abdominal pain and functional gastrointestinal disorders (including irritable bowel syndrome), are similarly common and similarly resistant to explanation: young people can describe significant, persistent stomach pain for years without ever receiving a diagnosis, while stress, anxiety, and poor sleep continue to intensify the experience. Musculoskeletal pain (in the neck, back, joints, and limbs) may stem from growth, posture, overuse, injury, or no identifiable cause at all, but its impact on physical activity and sports participation is often significant regardless of origin.
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Some conditions carry their own layers of complexity. Juvenile fibromyalgia, more common in adolescent girls and tending to run in families, is rooted in a phenomenon called central sensitization: the central nervous system itself amplifies pain signals, meaning the primary pathology sits in the brain and spinal cord rather than in the area where the pain is felt. That mechanism is supported by altered neurotransmitter levels and abnormalities on functional imaging, evidence that the pain is entirely real even when it defies a simple physical explanation.
Juvenile idiopathic arthritis, meanwhile, typically has an earlier and more identifiable onset, occurring in roughly 8 out of every 100,000 children, more frequently among girls and within Caucasian populations. Sickle cell disease brings its own set of school-based considerations, from ensuring consistent hydration and bathroom access to being mindful of temperature extremes that can trigger pain episodes.
The Link Between Trauma and Chronic Pain
One thread runs underneath nearly all of this material: the relationship between adverse childhood experiences and chronic pain. Childhood maltreatment, trauma, and adverse childhood experiences (ACEs) are linked to chronic pain not only in childhood, but well into adulthood, a connection Marsack-Topolewski frames through the body's stress response system itself. Trauma and chronic adversity overload that system, and an overloaded stress response can manifest as chronic pain earlier in the lifespan than it otherwise might.
The ten original ACE categories fall into three overlapping buckets: abuse (physical, emotional, and sexual), neglect (physical and emotional), and household challenges (parental mental illness, domestic violence, separation or divorce, an incarcerated household member, and parental substance misuse). One statistic Marsack-Topolewski returned to more than once: roughly one in four children in the United States is currently living in a home where parental substance misuse is occurring. For these children, the ACE isn't only the substance use itself, but the chronic unpredictability that comes with it: caregivers who are emotionally unavailable, exposure to conflict or unsafe situations, and an environment of secrecy, shame, and isolation, often without any explanation offered for what's happening. That absence of explanation, she noted, is what breeds confusion and self-blame in a child trying to make sense of an unstable home.
Trauma itself isn't a single, uniform category. Acute trauma involves one distressing event over a short period. Chronic trauma is repeated and ongoing: homelessness sustained over time, or continuous exposure to racism, for example. Complex trauma involves multiple, repeated distressing events across an extended period, and its boundaries with the other two categories aren't always clean. For children with autism specifically, Marsack-Topolewski has observed that what might initially look like a single acute event can function more like complex trauma, shaped by factors like rumination that extend its psychological reach well past the triggering incident itself.
The protective side of this equation matters just as much as the risk side. The impact of ACEs can be meaningfully buffered, and the single factor Marsack-Topolewski called her favorite is having at least one consistent, safe, caring adult in a child's life.
That adult doesn't have to be a parent. Given how regularly children intersect with the school system, even when their attendance isn't perfect, it may well be a teacher, a school counselor, or a school social worker. Honest and developmentally appropriate explanations, stable routines and predictability, opportunities to talk and be believed, and access to trauma-informed support all function the same way: as counterweights against adversity that a child cannot control on their own.
When Physical and Emotional Pain Blur Together
The connection between chronic pain and mental health isn't only about origin, but in how young people describe and cope with pain in the moment. One attendee, during the live Q&A of Marsack-Topolewski's August 14th presentation, raised the observation that teens with severe trauma histories sometimes describe both physical and emotional pain together, using maladaptive coping strategies to seek relief from both at once. Marsack-Topolewski's response drew on years of direct clinical experience with this exact overlap: in her work, the physical and emotional components of that pain were rarely separable. The coping behavior itself, while clinically concerning and never something to endorse, often functioned as a young person's attempt to manage both kinds of pain simultaneously, frequently against a backdrop of significant, sometimes undisclosed trauma history.
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This is precisely why avoiding a false either-or framing matters so much in practice. Pain is not purely physical or purely psychological but, in nearly every clinical presentation, both -- interacting and intertwined. A clinician, teacher, or provider who frames it as one or the other risks either overmedicalizing a young person's emotional experience or dismissing the physical reality of what they're describing.
What Validation Actually Looks Like
A recurring theme throughout the August 14th training was the particular danger of a child hearing that their pain "is all in your head," a phrase Marsack-Topolewski reframed rather than simply rejected. Pain genuinely is generated in the brain; that's not in dispute. What the phrase gets wrong is the implication that follows it: that because the pain originates neurologically, it isn't real, or doesn't deserve to be taken seriously. Reframing that distinction, without denying the neurological reality of pain, is itself a form of validation.
That validation work extends well past the individual young person.
Families are deeply affected when a child lives with chronic pain, and Marsack-Topolewski returned throughout the session to a guiding principle from her family caregiving work: a family is only as happy as its least happy member. Support flows in both directions -- a better-supported caregiver has more capacity to pour back into their child, and a better-supported child, and in turn, eases pressure on the caregiver. Practically, this means avoiding the dismissal of pain simply because it isn't visible or because diagnostic tests came back normal; avoiding an either-or framing of physical versus psychological; and shifting focus away from pain elimination alone and toward function, participation, and quality of life, for the young person and for the family unit supporting them.
What Teachers and Schools Are Missing
School staff occupy a uniquely important, and uniquely under-resourced, position in this picture.
Children and adolescents spend the bulk of their waking hours in school, yet, as Marsack-Topolewski noted from her own experience working across the state of Michigan, she has never once encountered formal training on chronic pain offered to teachers (outside of sessions she's delivered herself). A Delphi study by Castarlenas, Roy, Salvat, and Miró — "Educational Needs and Resources for Teachers Working with Students with Chronic Pain," identified four specific needs school staff have when supporting students with chronic pain:
- Information about appropriate attitudes and responses to a student in pain
- Strategies to reduce absenteeism
- Guidance on easing the return to school after a long pain-related absence
- Tools for establishing effective communication with the family
Those four gaps offer a fairly direct roadmap for any clinician working alongside a school system, whether as a school social worker, a counselor, or an outside provider coordinating with school staff.
Not to be forgotten, play and creative expression round out the practical toolkit for supporting these students day to day. Citing Maria Montessori's description of play as "the work of a child" (deliberate, focused, and purposeful rather than idle), Marsack-Topolewski pointed to its documented benefits: building resilience, reducing anxiety and fear, supporting emotional expression, and countering the social isolation that so often accompanies chronic illness in young people. Storytelling carries similar value, offering a low-pressure way for a young person to process experience and develop empathy, both for themselves and others.
Making the Invisible Visible
Much of this work resists a clean resolution. As Marsack-Topolewski put it near the close of the August 14th training: "We may not always be able to eliminate a young person's pain, but we can influence how supported, how understood, how capable and hopeful they will feel while living with it."
That reframes the work itself away from a singular focus on curing or eliminating pain, and toward the more attainable, and arguably more important, goal of ensuring a young person never has to carry that pain entirely alone.
Marsack-Topolewski closed the session with a line from Helen Keller that has stayed with her throughout her career: "Alone we can do so little. Together we can do so much." For a topic defined by its invisibility, one no single discipline can fully see or address on its own, that collaborative frame isn't just a nice sentiment, but the actual mechanism by which an invisible struggle becomes visible enough to treat. ◼
104628 The Clinician's Guide to Supporting Individuals With Chronic Pain & Co-Occurring Conditions
Chronic pain affects millions of people across the lifespan and can have a profound impact on physical health, emotional well-being, daily functioning, and overall quality of life. This webinar provides an overview of chronic pain, including current perspectives on the nature and derivation of pain, factors that contribute to its development and persistence, and the complex ways it affects individuals....
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