Living with chronic illness is never easy, but for Sara, it has also become a way to build bridges—both for herself and others navigating similar challenges. Through advocacy, peer support, and personal practices, she has learned how to stand her ground in difficult situations while helping others along their path.
Keep reading to learn more about Sara's story, her resilience, and the ways she’s finding strength in community.
Turning My Experience Into Support for Others
Chronic illness and pain are difficult to live with, but I’ve found ways to use my experiences to support others. Sharing my story has helped me connect with people who might be feeling isolated, and it’s given me the chance to make their paths feel a little less overwhelming. Knowing that my struggles can serve as a guide for someone else makes this journey more meaningful.
The Power of Community When Healthcare Falls Short
The chronic illness community has been there for me time and time again. While healthcare often has gaps, peer support has filled them in ways I didn’t expect. I’ve learned from others how to better advocate for myself and how to handle complicated, often frustrating, situations within the healthcare system. Beyond advice, I’ve built beautiful friendships with people who truly understand what it’s like to live with chronic illness. Those connections mean everything to me.
Advocacy in Action: Standing My Ground
One of the moments I’m most proud of happened during what should have been a routine infusion appointment. My appointment time was changed without my knowing, and when I arrived, I was denied a gurney—even though it’s in my chart that I need one.
I live with hip dysplasia, which makes it painful to sit upright for long periods, especially in a reclined chair. The bed isn’t just a preference; it’s a necessity. I stood my ground and told the charge nurse:
“I understand that there are limitations sometimes but I don’t understand how it is ADA compliant if it’s in my chart and you know about my accommodation needs in advance.”
Eventually, I was given the bed I needed, but the whole ordeal was stressful. I was proud that I spoke up for myself, but also sad because situations like this make me resent the fact that I need accommodations at all.
Rethinking Healthcare From My Perspective
If I could change one thing about healthcare, it would be creating better comprehensive care for complex health conditions. I live in a medical desert, and because of that, I often struggle to find quality care for many of my conditions. Coordinated and accessible care shouldn’t feel out of reach—especially for those of us managing multiple, interconnected health challenges.
Habits That Help Me Navigate Care
Over time, I’ve developed habits that make navigating care a little easier. I keep detailed notes after every appointment and every interaction with a provider. It helps me track what’s been said, what’s been promised, and what I need to follow up on. I also work with a care coordinator through my insurance, which has been a huge help in staying organized and ensuring I don’t miss important details. These small practices give me some structure in a healthcare system that often feels chaotic.
Building Bridges Through Shared Stories
My story is just one example of the many ways people with chronic illness are building bridges to better care. Advocacy, peer support, and practical habits have helped me move forward, even when healthcare feels overwhelming. By sharing my journey, I hope to remind others that they’re not alone and that their voices matter too.
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