In our recent webinar, Sharing the Sibling Experience: Insights from Adult Siblings, three adult siblings talked openly about what it was like to grow up with a brother or sister who had drug-resistant epilepsy and, in some cases, epilepsy surgery. Each of them brought a different life experience, but their stories quickly showed how much siblings often share, even when their paths look different on the surface.

Nancy grew up as the younger sister of a brother with drug-resistant epilepsy who later had epilepsy surgery and ultimately died from epilepsy as an adult. She is now a pediatric epileptologist, and she spoke about how being a sibling shaped both her personal life and her career. Her story reflected how deeply early family experiences can stay with siblings, long after childhood.

Amanda is the older sister of a woman with early-onset epilepsy who later had epilepsy surgery. She also works as a special education attorney. Amanda described growing up as the “helper” sibling, balancing responsibility and advocacy while learning over time that she was allowed to have her own needs, boundaries, and identity, too.

Samuel is the younger brother of an adult who had a right hemispherectomy for infantile spasms. He shared what it was like to grow up in a family where epilepsy was always present, how responsibility can arrive early for siblings, and how important it is to be seen first as a brother, not just a future caregiver.

Together, their stories reflected a wide range of sibling experiences, along with many shared themes that families recognize right away.

The conversation was guided by Emily Holl from the Sibling Support Project, who reminded us that siblings often become the quiet observers in families facing complex medical needs. They watch everything. They notice everything. And the epilepsy surgery journey leaves a deep impression on them, whether or not anyone asks how they are doing at the time.

That’s one of the reasons we created both this webinar and our sibling resource hub: to make sure brothers and sisters are seen, supported, and included as a core part of family care, not as an afterthought.

In many ways, siblings are walking their own parallel journey alongside their parents. Much of what parents experience when raising a child with significant medical needs, such as stress, fear, grief, pride, and resilience, is often true for siblings as well.

When we asked adult siblings how they learned about their sibling’s epilepsy, none of them described a single clear explanation or “big talk.” Most felt the impact long before they had words for what was happening. As one sibling said, “I was part of it, but I didn’t always understand it.”

They described learning through lived moments: emergency hospital trips, being dropped at friends’ houses during seizures, long EEG stays, and watching how teachers, peers, and strangers treated their sibling. For some, epilepsy had always been part of life, so there was no clear “before.” It was simply normal until they began to notice how different their family looked to the outside world.

The Sibling Relationship Is Lifelong

Siblings spend a lot of time together, especially in childhood, when they are often each other’s closest companions. That shared time has a powerful impact on social and emotional development.

Most siblings will know each other for decades. Long after childhood and surgery are over, siblings remain part of each other’s lives. Many eventually become part of the long-term support team, taking on roles they may not feel fully prepared for.

For some adult siblings, that means stepping into responsibilities such as health advocacy, coordinating services, or managing benefits once parents are no longer able to do so. It’s a meaningful role, but also a complicated and emotional one.

Siblings Feel More Than We Realize

What stood out most in the conversation was the emotional range siblings described, and how normal it all was once they said it out loud.

Many remembered being scared during seizures, medical emergencies, or surgery updates, and some said that fear still lingers into adulthood. Others talked about becoming helpers at a very young age: carrying equipment, counting seizures, watching younger siblings, or comforting their brother or sister afterward. Sometimes that responsibility felt empowering. Other times it felt heavy.

Several siblings described trying to be the “easy” child, the one who didn’t cause problems or add stress, and how that pressure can follow them well into adult life. At the same time, they spoke with deep pride about their sibling’s strength, growth, and perseverance after surgery.

For some, grief was also part of the story, especially for those who lost a brother or sister to epilepsy or SUDEP. As Emily Holl reminded us during the webinar, “Once a sibling, always a sibling.”

And alongside all of this, there was something very ordinary too: siblings still argue, get annoyed, and have conflicts. One sibling shared that it took decades to fully accept that being frustrated with her sister didn’t mean she loved her any less. It just meant they were siblings.

What Helped Siblings the Most

Parents often ask what actually helps when they’re trying to support siblings during epilepsy surgery. What stood out in our conversations with siblings was how consistent their answers were, even across very different families and outcomes.

Many siblings said that honest, age-appropriate information mattered more than parents realized. They didn’t need every detail, but they did need clear explanations they could trust. Several shared that what felt scariest wasn’t the truth, but not knowing what was happening. Being told “Don’t worry about it” often left them filling in the gaps on their own.

Siblings also talked about the importance of being included in ways that felt right for their age and personality. That might mean knowing when a hospital stay was coming, seeing pictures of the EEG room, or having a small role like helping pack a bag or choosing a stuffed animal. For many, helping in small ways, such as running meals, watching younger siblings, counting seizures, or reading to a brother or sister after surgery, helped them feel less powerless and more connected.

Just as important was being protected from having their whole life revolve around epilepsy. Siblings need space for normal childhood moments, too. Sports, hobbies, sleepovers, time with friends, and time with extended family all send the same message: your life matters, not just your role in this medical journey.

Validation came up again and again. Siblings wanted their feelings taken seriously, whether those feelings were sadness, jealousy, anger, fear, or confusion. They didn’t want to be told they were misbehaving or ungrateful. They needed to hear something simple and honest, like: “We know this is hard for you, too. Your feelings are real, and they matter.”

Finally, many siblings said it helped to have trusted adults outside their parents to talk to. Therapists, teachers, relatives, coaches, and mentors often became safe people they could lean on, especially when they didn’t want to add to their parents’ stress.

What Siblings Wish Had Been Different

When we asked siblings what they wished had been available to them growing up, one answer came up again and again.

“I wish therapy had been part of the package – for all of us. Not as ‘something’s wrong with you,’ but as normal support for a really intense life.”

Many siblings described feeling like support only showed up when things were already falling apart. Looking back, they said a few things would have made a real difference.

• Mental health support earlier, not because something was wrong, but because their lives were intense and unpredictable.
• Spaces just for siblings, such as Sibshops or sibling groups, where disability and epilepsy were normal, and they did not feel so different or alone.
• Clear boundaries around caregiving, with help separating being a sibling from being a caretaker.

Permission to just be themselves, to laugh, to argue, and to have lives that did not revolve entirely around epilepsy.