The Invisible Job: What Caregiving for a Rare Disease Really Looks Like
By: Dr. Paige Ryan, PT, DPT - Founder of Foundation First Physical Therapy and Coaching
When people think about rare disease, they often picture hospital stays, specialist visits, and complicated medical terms. While all this of course exists, they are missing a whole layer of the work that happens in between.
They don’t see the kitchen table covered in insurance papers.
They don’t see the late-night medication schedules taped to the fridge.
They don’t see the mental checklist running every minute of the day.
For many families, caregiving for a child with a rare or medically complex condition is a full-time job. The problem is, it’s a job with no training, no time off, and no clear job description.
As a pediatric physical therapist and caregiver coach, I spend a lot of time in families’ homes. I see what daily life really looks like. Appointments are only a small piece of the picture. Most of the work happens in the quiet, ordinary moments between them.
Caregivers are managing equipment deliveries, tracking symptoms, refilling prescriptions, and coordinating multiple specialists. They are emailing schools, calling insurance companies, and appealing denials. They are lifting, transferring, and positioning their child safely dozens of times a day. They are always planning three steps ahead.
All of this happens while they are still trying to be a parent, a partner, an employee, and a person.
One mom I worked with told me, “Every day feels like I’m running a small hospital out of my house.” That description is more accurate than most people realize.
This invisible workload adds up.
Research shows that caregivers of medically complex children spend dozens of unpaid hours each week on care tasks alone. That doesn’t include the mental load. The constant decision-making. The “what if” thinking. The feeling that if they miss one detail, something important could go wrong.
Over time, this pressure can lead to burnout.
Burnout doesn’t always look dramatic. Sometimes it looks like back pain from years of lifting. Sometimes it looks like snapping at your partner because your brain is too full. Sometimes it looks like forgetting your own appointments because every bit of energy goes toward your child.
Many caregivers blame themselves for this exhaustion. They think they should be stronger, more organized, or more patient.
But burnout in rare disease caregiving is not a personal failure. It is a predictable response to an impossible workload.
Caregivers are not just providing love and comfort. They are acting as case managers, therapists, advocates, and insurance gurus. They are building and running complex systems inside their homes because larger systems often fall short.
They become experts in medical language so they can ask the right questions.
They learn body mechanics so they don’t injure themselves while lifting.
They figure out how to regulate meltdowns, manage pain, and create moments of joy in the middle of uncertainty.
And they usually learn all of this on their own.
What most caregivers need is not more motivation or another inspirational quote. They need practical, real-life support. They need systems that make daily care safer and easier. They need help organizing information so they are not reinventing the wheel every time something changes. They need someone to say, “You’re not doing this wrong. You’re doing something incredibly hard.”
When families get the right kind of support, the change is noticeable. The day feels a little calmer. Transfers feel safer. Paperwork is easier to find. Decisions feel less overwhelming. Nothing about the diagnosis changes, but the weight of carrying it alone starts to lift.
Rare disease care will always be complex. But caregivers should not have to do this work in isolation.
Behind every child with a rare condition is someone quietly holding together a web of logistics, advocacy, and love. Recognizing that invisible job is the first step. Building real support around it is the next.
Exhaustion is not evidence that a caregiver is failing.
It is evidence that you have been carrying too much, for too long, without enough support.
If you’re looking for the light at the end of the tunnel, you don’t have to search alone. There is a community of people who understands this work, who believes in you, and who wants to help you build a path forward that feels lighter, steadier, and more sustainable. Looking for a place to start? Check out some of my favorite resources below.
Looking for support & coaching?
3-Day Caregiver Reset
A short, high-touch reset to identify your biggest energy leak, build one workable routine, and create a calmer weekly rhythm.
Best for caregivers who want fast relief without a long commitment.Balanced Foundations (6-month program)
Ongoing caregiver coaching focused on routines, body mechanics, advocacy, systems, and emotional support for complex care families.
Best for caregivers who want deeper, sustained support.
Interested in either of Paige’s programs? Start with a free discovery call: https://www.foundationfirstpt.com/book-a-call
Hoping to book some accessible travel?
Wonders Within Reach
A trusted resource for accessible travel planning for families with disabled and medically complex children; built by a mom just like you. From equipment logistics to accommodations, this is a helpful starting point for making travel feel more possible.
Website: https://wonderswithinreach.com
Are you (or someone you know) a bookworm?
Show Up and Bring Coffee: How to Support Your Friends With Disabled Children
by Megan Amrich
This book is for the people who want to support caregivers but don’t know how — and for caregivers who wish their village understood what actually helps. Through personal stories, humor, and practical examples, Megan Amrich outlines meaningful ways friends and family can show up during the hardest seasons. It’s also a powerful tool for caregivers who want language to ask for the kind of support they truly need.
Amazon: https://www.amazon.com/Show-Up-Bring-Coffee-Disabled/dp/B0CFZKZGS8
How to Handle More Than You Can Handle: Caring for Yourself While Raising a Disabled Child
by Amanda Griffith-Atkins
Written by a therapist and parent of a disabled child with high-support needs, this book explores the emotional realities caregivers often carry quietly: grief, anger, guilt, identity shifts, and burnout. Amanda Griffith-Atkins offers compassionate insight and tools to help caregivers move out of survival mode, practice self-compassion, and care for themselves alongside their children.
Amazon: https://www.amazon.com/How-Handle-More-Than-You/dp/1523527617
Drowning in paperwork?
Kangaroo Kids Pouch
A practical system for organizing medical records, IEPs, therapy notes, and emergency information. Designed with caregivers in mind, it helps reduce mental load and makes information easier to access and share when it matters most. The best part? You may qualify at no cost!
Website: https://www.kangarookidspouch.com
About the author:
Dr. Paige Ryan, PT, DPT is a pediatric physical therapist and caregiver coach and the founder of Foundation First Physical Therapy & Coaching. She supports families of medically complex and neurodivergent children to reduce caregiver burnout, build workable routines, and create safer, more accessible home systems. Paige blends clinical expertise with real-life family experience to help caregivers feel steadier, less alone, and more confident in their daily care.
Connect with Paige:
• Instagram: https://www.instagram.com/foundationfirstpt/
• Website: https://www.foundationfirstpt.com/
• Email: paige@foundationfirstpt.com
