Living with Ehlers-Danlos Syndrome (EDS): My Journey to Answers and Strength

I live with Ehlers-Danlos Syndrome (EDS) and its many comorbid conditions. EDS is a connective tissue disorder that affects the body’s collagen, which is responsible for holding everything—skin, muscles, joints, and even organs—together. When you have EDS, it essentially makes your connective tissue much more lax. On the outside, it can look like extreme flexibility, but on the inside, your body is working in overdrive trying to hold itself together—something most bodies don’t even have to think about. This leads to frequent dislocations, subluxations, injuries, chronic fatigue, and much more.

The challenge with EDS is that it is extremely misunderstood and under-researched. Because it’s systemic and affects the entire body, there’s no single specialist for it, making it difficult to diagnose. For most of my life, I had no explanation for my frequent injuries, chronic pain, and fainting spells. Doctors labeled me a hypochondriac, dismissing my symptoms as growing pains or attention-seeking. On two occasions in my youth, EDS was suggested, but doctors dismissed it, saying it was extremely rare and not worth exploring.

It wasn’t until I was an adult, after countless specialist visits, surgeries, flare-ups, and genetic testing, that I finally received my EDS diagnosis. Within the span of five years, I was also diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), dystonia—a movement disorder causing muscle spasms—and neurodivergence. Through research, I discovered that all these conditions frequently co-exist, stemming from the same gene cluster.

For years, I kept all of this hidden, terrified that people would no longer trust me to perform or that my career opportunities would vanish if they knew about my disabilities. Silently, I learned all that I could about how my body and mind operate. During that time, I realized these conditions are heavily stigmatized, underdiagnosed, and underresearched. After years of medical negligence and gaslighting, from specialists to everyday people, I became passionate about being the voice I needed throughout my life. I wanted to help others avoid the path I had to walk alone.

Now, five years since my initial diagnosis, I’m proud of who I am and see my unique genes as my superpower. I believe I was gifted these experiences to make a difference in the world, and my purpose in life has shifted greatly because of them.

These diagnoses, difficult as they were, brought with them a sense of acceptance and understanding of what makes me, me. Sure, there are moments when I wish I were like “everyone else,” but we all have our own story, and this is mine. With my diagnosis came something invaluable: knowledge. Knowledge has empowered me to build a tailored team of medical professionals, create a physical therapy plan designed specifically for my needs, maintain a diet that keeps inflammation in check, and live a lifestyle that minimizes flare-ups. I’ve become more in tune with my body than ever before, learning to manage symptoms before they spiral. When needed, I use braces, splints, or assistive mobility devices to help support my joints and prevent further injury. These tools allow me to move with more confidence and reduce the strain on my body. And when a flare-up does come, I’ve learned how to ask for help and extend myself grace.

I believe that everything happens for a reason. The adversity I’ve faced has given me a renewed sense of purpose. Writing became a deep passion during this time, offering solace as I transformed my experiences into stories that resonate with others. I’m currently developing a feature film that explores my journey of diagnosis and the reality of living with an invisible illness.

It’s an ongoing learning process, one that has helped me develop greater depth and empathy, which I now bring into everything I do. I’ve become passionate about focusing on work that breaks down stigmas and highlights the raw, honest reality of the human condition. I am constantly seeking out creative ways to spread awareness and make strides in the community.

Public figures like Lena Dunham, Billie Eilish, Selma Blair, Halsey, Sia, and Jameela Jamil, who also live with Ehlers-Danlos Syndrome, have been a lifeline for me. Their openness about their journeys made me feel seen, less alone, and gave me hope that my diagnosis was not the end of my dreams, but rather a new path toward them. Their courage to claim their diagnosis and use their platforms to raise awareness has shown me that living with EDS is not a death sentence to what I can achieve. Like them, I believe vulnerability is a powerful strength. Owning who you are paves the way for others to follow. My mission is to continue normalizing these conversations, breaking down stigmas, and empowering others to embrace their differences.

I am sharing my story now because I want to help others who might be feeling lost or misunderstood, just as I did for so many years. I also want to break the stigma that surrounds chronic illnesses and neurodivergent conditions. Living with EDS and its comorbidities doesn’t make me any less capable—it just means I take a different path, but I always reach my destination.