When you live with Ehlers-Danlos Syndrome (EDS), every day can feel like a puzzle you weren’t given all the pieces to—especially when you’ve lived most of your life not knowing you even had it. For me, EDS isn’t just a diagnosis; it’s a life journey that has spanned four decades of unanswered questions, unexplained pain, and constant searching for validation.

I’ve always known something was different about my body. At just 5 years old, I began developing cysts on my knees and ankles—an early warning sign that none of the doctors could explain. My dad, a Naturopathic Doctor at the time, tried to ease the discomfort with a form of sonogram therapy that sent electric pulses into my knees, while my mom would apply gel to my ankles and wrap my feet in Saran Wrap every morning before school. I didn’t know it then, but those odd rituals were the beginning of a long and complicated relationship with my own body.

By age 6, I realized I could do strange things with my joints—like folding my thumb backward to touch my wrist or wrapping it around to my forearm. People thought it was cool. I began to wonder if maybe I was just unusually flexible. But at age 7, things took a painful turn. My teacher wanted me outside more for physical activity, especially T-ball in the hot months. That’s when I discovered that sun exposure didn’t just make me hot—it actually hurt. I would hide in closets or bathrooms just to avoid the sun, even if it meant getting in trouble. My only explanation at the time was, “I don’t like to sweat.” I didn’t have the words to say, “The sun makes me sick.”

At age 8, my condition escalated—I began vomiting and fainting from exposure to the heat, eventually ending up in the care of emergency responders. Yet, again, doctors were baffled. They saw the symptoms but not the cause. That confusion has followed me throughout life. Despite suffering from heart issues, hearing loss, chronic pain, and repeated joint dislocations—including hips, fingers, and toes—most of my medical concerns were brushed off or misunderstood.

Today, over 40 years later, I’m closer than ever to real answers. I now strongly suspect that I have Ehlers-Danlos Syndrome, most likely one of the more severe forms, possibly with co-occurring Mast Cell Activation Syndrome (MCAS). After decades of being dismissed by countless doctors in Georgia, I’ve chosen to pursue private DNA testing—not just for myself, but for my family, because EDS is genetic and can affect generations.

The Reality of EDS: How It Changes Over Time

EDS isn’t a static condition. As documented in the EDS Aging Project by Chronic Pain Partners, symptoms evolve and often worsen with age. Many contributors describe a similar story: a relatively normal (albeit painful) youth followed by a dramatic shift in health and mobility as they aged.

Margaret E., for example, was an athlete who maintained strength and mobility through her 40s. But at 52, she suffered two life-threatening vascular events—cervical artery dissections—and was later diagnosed with an aortic aneurysm. Jennifer A. shared how everyday exertion now leaves her with fatigue that takes longer to recover from, while Jeanne M. spoke about the painful loss of identity that came with no longer being able to play guitar, knit, swim, or even walk long distances.

Others, like Kathryn S., noted that they thought their unusual symptoms were normal because family members had them too. Many people with EDS grow up thinking everyone experiences dislocated ribs from laughing or needs to tightly wrap their joints just to function in sports.

As for Melissa M., aging brought an unexpected new challenge—resistance to local anesthesia. From dental work to biopsies, she now faces procedures without adequate pain management, which sometimes prevents her from getting care altogether. Her story is all too familiar to many of us living with connective tissue disorders.

And let’s not forget the emotional impact. Karyn W. talks about accumulating more allergies with age, while Pashondra J. traces her decline to post-surgical exhaustion. Wilder E. describes how they were athletic in youth, but had to wrap joints to prevent injury—a need that only worsened over time as their body began to “come apart.”

A Community that Understands

Reading these stories helped me feel seen. For the first time in my life, I wasn’t alone in my experience. These aren’t just anecdotes—they’re shared truths from a community of people who have lived in bodies that betray them, often in silence and without support. EDS is not rare—it is rarely diagnosed.

I’m now investing in my health in ways I never thought I’d have to—financially, emotionally, and physically—through genetic testing and continued advocacy. And while it’s not easy, I’m driven by a desire to finally understand what’s going on inside my body and to help my loved ones avoid the confusion I endured.

Let’s Meet in Person!

If you live in or near Atlanta, Georgia, I’d love the chance to meet you! I’ll be at the Scholar and Scribe Bookstore in Fayetteville, Georgia on Saturday, May 31st at noon for a special book signing of my latest release, Freedom’s Pursuit: The Mystery Girl. This novel is close to my heart, and I’m excited to connect with others who appreciate stories of resilience, hope, and mystery. There will be refreshments, friendly faces, and (hopefully) some great conversations.

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Together, let’s raise awareness about EDS, support one another, and continue fighting for understanding and proper care. Thank you for reading—and I hope to see you on May 31st!