Last July, the Utah Parent Center had the opportunity to present to a group of teen siblings at the National Juvenile Arthritis Conference held in Salt Lake City, Utah. Through The Sibling Project at UPC, the goal was to share resources, create connections, and support siblings navigating the unique experiences that can come with disability and chronic illness.
What emerged from those conversations was a powerful reminder: no matter the diagnosis, sibling emotions are often deeply similar.
Representing the Utah Parent Center and The Sibling Project at the conference was coordinator Lexie Dopp, who is also a sibling herself to someone with Autism and a chromosome duplication. For Lexie, the experience reinforced how universal many sibling experiences can be. While every family’s journey looks different, many of the teens at the conference shared emotions that felt familiar: concern, empathy, sadness, and the quiet weight of watching someone they love struggle.
What Is Juvenile Arthritis?
When most people hear the word “arthritis,” they picture a middle-aged or elderly person with stiff, aching joints. Juvenile arthritis, or JA, shatters that assumption entirely. It is an umbrella term for a group of autoimmune and inflammatory conditions that affect children 16 and under, and it impacts approximately 300,000 kids in the United States alone.
Juvenile arthritis refers to rheumatic diseases in children aged 16 and younger. These diseases have many distinctions from adult forms of the diseases and are treated differently from adults. The most common is juvenile idiopathic arthritis (JIA, previously known as juvenile rheumatoid arthritis). Others include juvenile psoriatic arthritis, pediatric lupus and several others.
Source: Arthritis Foundation
The Sibling Who Sees It All
At the Utah Parent Center, we recognize that siblings often see and absorb more than others realize.
They are in the car during the long drives to rheumatology appointments. They notice when their brother or sister wakes up stiff and struggling before school. And just like the siblings I was with last July, they are an important part of the JA community. They’re there on the hard days and the good ones. And because they love their sibling, deeply and instinctively, they absorb the emotional weight of what they observe.
Like the siblings at the conference, many quietly carry the emotional weight of what they observe every day.
At the same time, many had rarely been asked how they themselves were coping.
Siblings of children with chronic illness or disabilities are often the family members who quietly adapt, understand without full explanations, and carry complicated emotions without always having space to express them. At UPC, we believe siblings deserve that space.
Introducing the Sibling Journal
That belief is exactly why The Sibling Project at the Utah Parent Center is proud to offer the Sibling Journal, a free resource created in collaboration with LEFA Collective, a local sibling-owned business that understands these experiences firsthand.
This journal was built for siblings of all ages who need a place to put their feelings. Not just somewhere to put them, but somewhere safe. It’s a tool for self-discovery and reflection, filled with thought-provoking prompts and therapeutic worksheets designed to help siblings explore their past, their present, and what they hope for in the future. It creates space to navigate complicated emotions, build self-awareness, and articulate needs they may not have known how to name before.
The journal is flexible. It can be used as a daily emotional wellness habit, a quiet few minutes of checking in with yourself. It can also be used as a guided debrief after a particularly difficult moment, like a sibling’s bad flare day or a hard medical appointment. There’s no wrong way to use it, and no wrong feelings to bring to it.
Download the Sibling Journal for free here.
More Resources for Siblings and Families
The Sibling Journal is just one piece of a larger support system. Here are additional resources worth bookmarking:
- Helping Your Child Cope with Chronic Illness
- Empowering Siblings Tips for Debriefing & My Feelings Chart
- Talking With Your Child About Their Sibling’s Disability
