Finally, we turn our attention to the emotional and psychological experience of pediatric MS. Clinical psychologist Dr. Jennifer Lindwall shares her expertise supporting children, teens, and their families as they navigate life with a chronic medical diagnosis. Her perspective reminds us that caring for emotional well-being is just as vital as managing physical health.
A Life-Changing Diagnosis
When a child is diagnosed with multiple sclerosis, the emotional impact often ripples through the entire family. For some, it’s a moment of intense fear or uncertainty; for others, it brings clarity after a long stretch of unanswered medical questions. According to Dr. Jenny Lindwall, a pediatric psychologist who works closely with children living with MS, no two emotional journeys are the same—and that’s an essential truth for families to understand.
“Getting any sort of chronic or significant medical diagnosis, in and of itself, can bring up a lot of different emotions for both kids and families,” says Dr. Lindwall. “Some may feel overwhelmed or blindsided. Others may experience something more like grief, as their idea of what life would look like starts to shift.”
ADVERTISEMENT
Lindwall emphasizes that there’s no single “right” way to respond. “For some kids and families, it’s about moving forward and getting back to routines and the things that are important to them. And all of those responses are valid.”
These varied reactions aren’t just normal—they’re expected. One family may immediately dive into understanding treatment plans and clinical terminology, while another might first need time to emotionally process the news. Children may worry about school, friendships, or staying involved in sports and hobbies. Others might be unsure about whether—or how—to talk about their diagnosis with peers.
“There’s a lot to manage,” Lindwall explains. “Some families have never even known someone with MS, so it’s entirely new territory. Just learning what it means can bring up big emotions—fear, uncertainty, sadness.”
Beyond the emotional reaction to the diagnosis, MS itself can affect the brain in ways that increase vulnerability to mental health conditions like depression or anxiety. “That’s why it’s so important for both parents and providers to be really in tune with a child’s emotional experience,” she notes.
The complexities often evolve over time. A child or teen with MS may begin to question their independence or future goals, especially when thinking about college, careers, or relationships. “Teenagers, in particular, are in this phase where they’re striving for independence,” Lindwall says. “An MS diagnosis can add another layer of stress and wondering, ‘Will I still be able to do the things I want to do? Will I need to do things differently now?’”
And when it comes to social dynamics, there’s no universal approach. “Some kids want to tell everyone. Others are more private and selective about who they share their diagnosis with. Both choices are valid—and navigating those decisions can bring up anxiety, too.”
Lindwall stresses the importance of meeting families where they are—emotionally and developmentally. “Validation goes such a long way. Just letting kids and families know that whatever they’re feeling is okay—that’s a huge part of helping them navigate this journey.”
Emotional Impacts of MS
MS is a neurological condition, which means it affects the central nervous system—including the brain. As a result, it can interfere with mood regulation and raise the risk for mental health challenges such as anxiety and depression.
“Even beyond the emotional reaction to being diagnosed, we know that MS can biologically increase vulnerability to mental health concerns,” says Lindwall. “So when we see emotional or behavioral changes in a child or teen, it’s essential to consider whether those shifts might be linked to the illness itself.”
Unfortunately, these emotional symptoms can be harder to recognize, especially in children who internalize distress or struggle to express their feelings. They may appear withdrawn, less motivated, more reactive, or simply not like themselves. Sleep patterns and eating habits may shift. In teens, mood swings or social withdrawal might be mistaken for typical adolescent behavior, making it easier to overlook early signs of psychological strain.
“Sometimes kids can’t quite put their emotions into words, or they may not want to burden their parents,” Lindwall explains. “That’s why consistent emotional check-ins and open lines of communication are so important—even if the child isn’t actively asking for help.”
Coping with the Uncertainty of MS
For most families, MS is a completely unfamiliar diagnosis. The steep learning curve—understanding the disease, treatment options, lifestyle changes, and long-term implications—can be daunting.
“Parents are often overwhelmed by the sheer amount of new information,” says Lindwall. “They’re asking: What does this mean for our daily life? How will this affect school, friendships, and the future?”
Children and teens are often asking similar questions, though they may express them differently. For younger children, there might be fear around going to the hospital, taking medication, or missing out on everyday activities. For teenagers, concerns often revolve around identity, independence, and how their diagnosis will impact relationships, academics, jobs, or college.
“Young people are in the process of figuring out who they are and what kind of life they want to build,” Lindwall notes. “A diagnosis like MS can shake that foundation. They may worry: Will I still be able to live the life I imagined?”
This is where the role of emotional support becomes critical. Helping kids and teens reframe their outlook can empower them to imagine a future that still aligns with their values, even if the path looks different than they originally pictured.
“I help young people see that while their life may look different, it is still full of possibility and meaning,” says Lindwall.
Start with the Fundamentals: Routine and Wellness
One of the most powerful but often overlooked coping strategies is simply maintaining a healthy routine. “When we go through something like a new diagnosis or stress, it can disrupt our daily rhythms,” says Lindwall. Re-establishing these routines—especially around sleep, meals, and movement—can provide much-needed stability for children adjusting to life with MS.
Consistent, quality sleep is particularly vital, as it directly impacts mental health. Lindwall notes that teens may struggle with staying on a regular sleep schedule, but supporting healthy sleep habits is essential for emotional regulation and energy management.
Nutrition and hydration also play key roles. Encouraging kids to eat regular, balanced meals and drink enough water supports both physical and mental well-being. Incorporating physical activity—whether it’s a structured exercise routine or simple daily movement—further enhances overall health and offers a natural way to manage stress.
“We’re not just helping kids manage distress and challenges — we’re helping them build lives that are joyful, connected, and full of meaning.”— Dr. Lindwall
Intentional Coping Skills: Breathing, Mindfulness, and Communication
Beyond the physical aspects of wellness, kids benefit from learning concrete emotional coping skills. Techniques such as deep breathing, relaxation strategies, and mindfulness can help manage anxiety and improve day-to-day functioning. Lindwall stresses the importance of being intentional with these tools, especially as children and teens navigate the emotional complexities of MS.
Equally important is fostering open, ongoing communication. For adolescents striving for independence, talking about emotions may not come easily. Parents can support their children by creating low-pressure opportunities to check in. “This doesn’t have to be formal,” Lindwall says. “It could be part of your daily routine — just asking how their day went or how they’re feeling after a medical appointment.”
Parents are also encouraged to model emotional openness themselves. Sharing feelings in an age-appropriate way, such as expressing that a clinic visit felt overwhelming, helps normalize emotional expression and builds trust. “It creates a sense of humanness,” Lindwall explains, and invites children to share their own thoughts more freely.
The Power of Social Support
Lastly, Lindwall highlights the vital role of social support. “Social connection is a protective factor,” she says. Encouraging children to spend time with friends and loved ones, whether in person or virtually, can ease feelings of isolation and help them feel supported. Ensuring access to a broader support network, including peers who understand their experience, adds another layer of resilience.
By combining these foundational wellness practices with emotional and social coping strategies, families can help children with MS build strength, manage stress, and maintain a sense of normalcy in the face of a sometimes-unpredictable health issue.
The Challenge of Disclosure: When and How to Share
One of the most delicate emotional challenges kids and teens face after diagnosis is deciding whether to share their diagnosis with peers, teachers, or others in their lives. For some, the idea of telling people feels like a heavy burden. For others, it’s a way to seek connection or explain changes in their behavior or routines.
“This is often something we spend a lot of time working through,” says Lindwall. “The first step is just helping the young person talk about what it would mean to share their diagnosis, and also what they’re hoping to gain from that.”
Lindwall encourages kids to start by having that conversation with a trusted adult, whether it’s a parent, therapist, or school counselor. This safe space allows them to clarify their values, determine what they feel comfortable sharing, and prepare for how different people might react.
“There are different reasons why a child might share,” she explains. “With school staff, it might be for accommodations. With friends, it might be about wanting them to understand why they’ve missed school or seem more tired lately.”
Crucially, kids and teens need to know that disclosure is always their choice. They can decide how much to share and with whom. And it doesn’t have to be all or nothing; what they tell a teacher may be different from what they share with a close friend.
But even with preparation, not every disclosure experience goes smoothly. Some teens feel let down by how others respond.
“I’ve had teens tell me, ‘I shared this really vulnerable thing and my friend didn’t say anything.’ That can be deeply painful,” Lindwall says. “So we process that together by talking through what they hoped would happen, what actually happened, and what they want to do next.”
Those conversations help kids reflect without internalizing shame. They learn that even when something doesn’t go as planned, they can make new choices and try again, which helps build overall resiliency.
“It’s powerful to see kids recognize their own strength.”— Dr. Lindwall
Reclaiming Identity, Purpose, and Joy
At the heart of Lindwall’s work is a deeply held belief: young people with MS are strong, capable, and far more than their diagnosis. Honoring who they are—beyond medical appointments and symptoms—is essential for nurturing resilience and self-worth.
“Kids need to feel like they’re still themselves,” she says. “MS is part of their story, but it doesn’t define who they are.”
Lindwall emphasizes the importance of staying connected to what brings joy and meaning. Whether it’s painting, playing sports, learning music, gaming, or spending time with friends, these passions remind children of their own agency, creativity, and spark.
She also encourages families to revisit dreams—not as a way of dismissing grief, but as a path toward possibility. It’s not about recreating the life that existed before MS; it’s about discovering new ways to thrive.
“I love checking in with kids a year or more after their diagnosis,” she shares. “Even when things are still hard, they can often name ways they’ve grown—how they’ve become more empathetic, braver, or more self-aware. It’s powerful to see kids recognize their own strength.”
Supporting the Emotional Well-Being of Parents
While children are building new versions of themselves, parents and caregivers are navigating their own emotional landscape, often quietly. Many feel a responsibility to stay strong for their child, even while wrestling with their own grief, anxiety, or uncertainty.
“Parents often feel like they have to hold it all together,” Lindwall says. “But they’re on their own emotional journey, too. And they deserve space to process that.”
It’s common for family members to cope in different ways. One parent might dive into research and logistics, while another—and the child—may need time to simply exist in the familiar. These differences don’t mean the family is out of sync; they reflect the unique paths each person is walking.
“When we normalize these varied timelines, it helps reduce guilt and tension,” Lindwall explains. “It allows families to show up for one another with more compassion.”
Just as kids need support, so do parents. Whether through therapy, support groups, or conversations with trusted friends, caregivers benefit from safe spaces to be honest, feel seen, and regain their own footing.
Holding Space for Hope
Pediatric MS brings with it real and lasting challenges—but it also reveals the extraordinary resilience, courage, and inner strength of young people and their families. These kids are not just surviving a diagnosis – they’re learning to live, grow, and redefine what’s possible.
Lindwall’s message is unwavering: emotional well-being isn’t a luxury or an afterthought—it’s essential care.
“We’re not just helping kids manage distress and challenges,” she says. “We’re helping them build lives that are joyful, connected, and full of meaning. That’s what they deserve—and what they’re more than capable of creating.”
