Model: Leah Julia Linder

My name is Julia Linder, and I am a 20-year-old student at Barnard College. Growing up, I was incredibly passionate about dance—especially tap dance. However, in my sophomore year of college, I developed widespread chronic pain, which doctors eventually diagnosed as hypermobile Ehlers-Danlos Syndrome (hEDS), a rare connective tissue disorder that affects all the joints, tendons, and ligaments in my body.

Living with this widely misunderstood invisible condition has been both isolating and challenging, especially as I grapple with the daily uncertainty of never knowing how much pain I will experience or which body parts it will affect. While I can’t actively pursue dance anymore, I’ve found solace in my love for 1960s & 1970s music and fashion, which is why I wanted my portrait to reflect these other aspects of my identity while still featuring the braces that enable me to navigate daily life.

I will admit that embracing my disability has been a gradual process, but hEDS is a significant part of my reality, and I believe in living authentically, regardless of the challenges I face.


Photographer: Jiamian Zhu