Finding Strength in Challenges: How Ehlers-Danlos Syndrome Has Made Me a Better Parent

Life often presents us with unexpected challenges, and for me, one of those challenges was being diagnosed with Ehlers-Danlos Syndrome (EDS) ten years ago. In fact, his diagnosis led to my own, and while it might seem counterintuitive, I am genuinely grateful for this condition. It has shaped me into a more empathetic person and has profoundly enhanced my ability to understand and support my son, who also navigates life with invisible disabilities.

A Journey of Understanding

EDS, a connective tissue disorder, has brought its fair share of pain and limitations, however, it's also given me with a unique perspective on the daily struggles faced by those with invisible disabilities. The pain, fatigue, and unpredictability of each symptom has taught me resilience and patience—traits that I find even more valuable raising a child with similar challenges.

Empathy Born from Experience

Experiencing the ups and downs of EDS has deepened my empathy. I definitely understand what it feels like to have a body that doesn’t always cooperate, to feel different, and to navigate a world that doesn't always see or understand your struggles. I've found empathy to be a cornerstone in how I support my son. I can relate more fully to his frustrations, his need for rest, and his moments of triumph when he overcomes a hurdle that others might take for granted.

Managing with Compassion

EDS has also equipped me with the practical knowledge on managing chronic conditions and dealing with the every day struggles. I’ve learned the importance of pacing, the value of a good support network, and the necessity of advocating for oneself in various settings. These lessons have been crucial in helping my son manage his own health. Together, we navigate medical appointments, school days therapy sessions, and daily routines designed to minimize stress and maximize well-being.

Building a Supportive Environment

Understanding my son’s needs goes beyond managing symptoms; it’s about creating an environment where he feels safe, understood, and empowered. My experience with EDS has highlighted the importance of accessibility and adaptability in our home and school environments. We’ve developed strategies that help him cope with anxiety, handle sensory overload, and feel confident in self-advocacy.

A Shared Journey

Living with EDS has also created a special bond between my son and me. We share a unique journey that fosters deep mutual understanding and respect. He knows that I truly “get it” when he’s having a tough day, and I can offer genuine encouragement and advice from a place of lived experience. And he does the same for me. This shared journey strengthens our connection and reminds us both that there is always someone who understands, will listen on a bad day and will also genuinely celebrate an achievement or even just a good day.

Finding Purpose in Pain

One of the most significant ways EDS has influenced my life is through starting WearIt. and developing a new tool to help not just my son, but other students with invisible disabilities. . Inspired by our shared experiences, it will help students navigate their school days with less anxiety and more confidence.

Embracing Gratitude

Gratitude doesn’t mean ignoring the difficulties; it means recognizing the growth and strength that can arise from them. Living with EDS has taught me to find silver linings and to appreciate the lessons hidden within the struggles. I am grateful for the empathy, resilience, and purpose that EDS has brought into my life. These qualities not only help me manage my condition but also empower me to be the best parent I can be for my son.

In embracing my journey with EDS, I’ve discovered that our challenges can also become our greatest strengths. Through empathy, understanding, and shared experiences, we can build a world that is more supportive and inclusive for everyone, regardless of the visible or invisible battles they face.