Someone you love has been diagnosed with Guillain-Barré Syndrome (GBS), and overnight you’ve become a caregiver.
All of these feelings are normal and expected. You are not failing — you are human.
Your role: Medical advocate, information gatherer, family communicator, emotional anchor.
What it feels like: Survival mode — adrenaline, fear, confusion, and critical decisions while running on empty.
Your role: Hospital navigator, treatment partner, family coordinator, your loved one’s voice when they can’t speak.
What it feels like: A marathon — the crisis energy fades, but the stress remains relentless.
Your role: Recovery coach, therapy partner, emotional supporter, long-term advocate.
What it feels like: A mix of hope, impatience, grief for what was lost, and joy for what’s returning.
You may be the first to notice something’s wrong. Trust your instincts — you know your loved one better than anyone.
Emergency callout: If your loved one has trouble breathing, swallowing, or rapidly worsening weakness — call 911 immediately.
“buzzing.”
“He’d had a stomach bug two weeks earlier but seemed fine. By Saturday he was stumbling. I’d never heard of GBS, but I knew this wasn’t normal. I pushed him to go to urgent care. By Monday he was in the ICU on a ventilator. My insistence probably saved his life.”
Lesson: Don’t let anyone dismiss rapid neurological changes as “stress,” “fatigue,” or “getting older.”
• Ignore your own medical needs.
• Try to handle everything alone.
• Feel guilty about needing rest.
“When they said he needed to be intubated, I thought it meant he was dying. The ICU doctor sat with me and explained that the ventilator was protecting him while his body healed—like a cast protects a broken bone. David was sedated, so he wasn’t suffering or scared. I could still talk to him, play his favorite music, and hold his hand. The hardest part was not knowing how long it would take, but the nurses reminded me that every day on the ventilator was a day his breathing muscles could rest and recover.”
Maria, who cared for her 67-year-old mother, recalls:
“The hardest part wasn’t the ICU—it was months 4–8 of recovery. Mom was walking again but exhausted all the time. She was depressed about not being herself. I was drained too, and guilty for wanting my life back. Everyone expected us to celebrate, but we were struggling. It took almost two years for her to feel like herself again—and for me to feel like I had my own identity back.”
“I won’t sugarcoat it—it was the hardest two years of our lives. But she did recover, more than we dared hope in those early days. She walks, works part-time, and even travels with me. She gets tired faster than before, and I’m more protective than I used to be, but we have our life back. The experience changed us both, but not entirely in bad ways. We don’t take health for granted anymore, and we know we can handle a crisis together.”
You don’t have to fix everything. You just have to be present, advocate when needed, and take care of yourself along the way.
This guide provides general support and information for GBS caregivers. For specific medical advice, always consult with your healthcare team. For mental health crises, contact emergency services or call the National Suicide Prevention Lifeline at 988.