Siblings of children with rare disease are often described as resilient, empathetic, and strong beyond their years, and they are. But behind those strengths are quieter, often unspoken losses. This piece explores what siblings “lose in the fire” of rare disease and invites a more honest, compassionate understanding of their experience.
I found myself procrastinating when it came to writing this blog. On the surface, it would be easy to blame a full schedule or a hectic season. And yes, those things are true. But after 20+ years as a clinical therapist, and 14 years living this rare disease parent life, I know better. Procrastination like this usually has a deeper root.
The truth is, I hesitated because this topic is hard.
Even after all these years, it is still difficult to sit with the reality of what siblings of children with rare disease carry. What my children carry. It’s much easier to talk about their strengths: their empathy, their maturity, their ability to adapt in ways that far exceed their years. Those things are real. They are beautiful. They deserve to be named and celebrated.
And we cannot only tell that part of the story.
Because when we only highlight what siblings gain, we risk overlooking what they lose in the fire.
And there are losses. Losses that can break a parent’s heart.
Not always obvious. Not always spoken. But real, nonetheless.
Siblings of children with rare disease often lose pieces of a childhood that might have looked different. They may lose:
- Undivided attention
Not because they are less loved, but because medical needs are relentless; appointments, hospitalizations, crises that don’t wait. Attention can be fragmented, and siblings learn early what it means to be “low maintenance,” even when they need more. - Predictability and stability
Plans change. Vacations get canceled. Even ordinary days can shift quickly depending on symptoms, flares, or fatigue. Siblings learn to live in a state of “maybe,” which can quietly shape how safe the world feels. - The freedom to just be a kid
Many siblings grow up quickly. They become helpers, protectors, the “easy one.” They learn to read the room. They don’t want to add stress. And in doing so, they sometimes bypass their own messy, age-appropriate needs. - Emotional space
Big feelings often get pushed aside; not because they aren’t allowed, but because there never seems to be enough room. Guilt can creep in: How can I be upset when my sibling is going through so much? Emotions get tucked away, minimized, or delayed. - A sense of fairness
Even the most compassionate sibling notices the imbalance. There are different rules, expectations, and levels of attention. And while they may understand why, understanding doesn’t erase the feeling. - Parts of their relationship with their sibling
Love is absolutely there and it’s fierce and protective. But illness can shape that relationship in ways that include worry, responsibility, or even fear. It’s not always the carefree sibling dynamic we imagine.
Naming these losses is not about guilt. It’s not about blame.
It’s about truth.
Because when we are willing to acknowledge what is lost, we create space to respond with intention rather than assumption.
We begin to see siblings in a more balanced way. Not just as the “strong ones” or the “helpers,” but as children with their own inner worlds, needs, and grief.
And from that place, we can begin to support them differently:
- Check in without assuming they’re okay
- Create small, intentional moments of connection just for them
- Give language to their experience so they don’t feel alone
- Normalize their mixed emotions
- Remind them that their needs matter too
Here’s the part I hold onto, even in the midst of this truth:
Acknowledging loss does not diminish the strength these siblings develop. It deepens our understanding of it.
Because their empathy didn’t come from nowhere.
Their resilience was forged in something real.
Their perspective was shaped by both love and loss.
And when we honor both sides of their experience, we offer them the opportunity to be fully seen.
Not just for how they show up for everyone else, but for who they are and what they carry.
There is loss in the fire. There is no denying that.
But there is also opportunity…to step in more intentionally, to love more deliberately, and to ensure that these incredible siblings are not just admired… but truly supported.
by Ronda Thorington, MA, LPC
May 2026