By Amy Shulfer, RN, MSN, CWON
When medical professionals think about healthcare, our minds naturally drift to the clinical milestones: the successful surgeries, the mastered appliance changes, the stable lab results, and the healing margins of a physical wound. Since 2003, I have spent over two decades navigating these exact clinical spaces as a certified Wound and Ostomy nurse. I know the rhythm of the hospital floor, the precision of a dressing change, and the vital importance of proper patient education.
But there is an entire world of caregiving that happens outside the clean boundaries of a hospital room. It is the invisible architecture of care—the emotional, mental, and spiritual infrastructure required to support a loved one through a chronic diagnosis, a new ostomy, or a long-term illness.
And it is a world I know intimately, not just as a nurse, but as a daughter.
For years, my family lived in the relentless “current” of illness. I navigated my own journey with ulcerative colitis, watched my mother courageously battle multiple sclerosis, and stood beside my father through his own significant health crises, including his journey with an ostomy. In that quiet, heavy space of family caregiving, the clinical boundaries blurred. I wasn’t just checking vitals or ordering supplies; I was holding the hand of the people who raised me, watching the roles reverse, and wondering how to keep from drowning in the exhaustion.
The Myth of the “Perfect Caregiver”
If you are currently caring for a spouse, a parent, or a child navigating an intestinal or urinary diversion, you likely know the weight of the phrase, “I’m fine.”
Caregivers are notorious for wearing a mask of absolute strength. We believe that to be a good caregiver, we must be unbreakable. We tell ourselves that our exhaustion is a sign of failure, that our moments of frustration mean we aren’t loving enough, and that asking for help is an admission of defeat.
But human structural integrity isn’t built to hold up a house alone during a storm.
In my years at both the professional bedside and the personal bedside, I have learned that the emotional toll of caregiving is often heavier than the physical labor. It is the constant undercurrent of anticipatory grief, the anxiety of the unknown, and the profound isolation of feeling like no one truly understands the day-to-day reality of your home.
When my family’s health trials were at their heaviest, I had to completely re-evaluate what it meant to love and serve through hardship. I had to learn that real love isn’t defined by the easy things—the laughter, the vacations, or the quiet moments of comfort.
Here is an excerpt from my memoir, Carried Through, where I had to put words to this exact breaking point:
“I never imagined that faith and suffering would be so intertwined. When I was younger, I thought faith meant believing that everything would turn out okay, that prayers for healing would be answered, that pain would be temporary, and that miracles would come if I just believed hard enough. But life reshapes faith, especially when sickness, caregiving, and loss become part of your daily reality.
I have lived with chronic illness. I have watched my parents battle diseases. I have lost dear friends far too soon. I have sat beside a dying patient, feeling the mystery of a soul departing from its earthly body… We think love is the easy things: the laughter, the vacations, the way someone holds your hand in a crowded room. But real love is steadier than that. Real love shows up with steady hands on the hardest days.”
Finding Your Anchor in the Storm
If you are a caregiver reading this today and your hands feel anything but steady, please hear me: You do not have to swim alone. Loving someone who is suffering is a sacred calling, but it requires a community to sustain it.
To help anchor your heart when the current feels too deep, I want to share three practical, grounding truths that saved me during my family’s darkest valleys:
- Give Up the Control, Keep the Faith
Much of a caregiver’s anxiety comes from trying to control outcomes we cannot touch. We cannot force a wound to heal faster, and we cannot predict every complication. Realizing that you are not the grand architect of the universe is not a failure, it is a liberation. It allows you to focus strictly on the next hour, the next step, and the next breath, trusting that there is a steady presence holding the rest together.
- Embrace the “Breath Prayer”
When you are sitting in a sterile hospital waiting room or dealing with a difficult appliance leak at 2:00 AM, a long, elegant prayer feels completely out of reach. In those moments, give yourself permission to use “breath prayers”, short, simple cries of the heart that can be spoken in a single inhale and exhale.
(Inhale) Lord, give me Your strength… (Exhale) For this next step.
(Inhale) I cannot hold this… (Exhale) But You can.
- Lean on Specialized Advocacy
You cannot be the medical expert, the emotional rock, and the logistical coordinator all at once without resources. Organizations like the United Ostomy Associations of America (UOAA) exist precisely because this journey requires structural support. Whether it is finding a local support group, accessing educational material that takes the mystery out of a new stoma, or connecting with an ostomy outpatient clinic, utilizing these tools is an act of strength, not weakness.
You Are Still Being Carried
To the caregiver standing at the bedside today, the one navigating the heavy silence of a changing diagnosis, or the one balancing your own health battles while supporting someone else: your identity is not defined by the illness in the room. You are more than a patient, and you are more than a caregiver.
Even on the days when you feel creased, folded, and entirely spent, your service is seen. Your quiet resilience is creating a legacy of love that endures far beyond the clinical challenges. Take a breath, allow yourself to be human, and remember that even when you don’t have the strength to carry the weight, you are being safely carried through.
Amy Shulfer, RN, MSN, CWON, is the author of the new memoir, Carried Through: A Daughter’s Reflections of Love, Loss, and the God Who Carries Us, available on Amazon. She is also the creator of the YouTube channel “Ostomy Care with Angel Face Amy,” where she shares practical advice, clinical advocacy, and heartfelt encouragement for the IBD and ostomy community.
