Invisible Illness

‘Invisible Illness’, is a story of my sister, Kylie, and her struggle with Ehlers-Danlos syndrome. In the course of a day she went from practicing competitive dance 20 hours a week, to being unable to move her legs or arms without screaming out in pain. EDS is a connective tissue disorder that affects the joints, skin, muscles, tendons and ligaments, blood vessels, organs, gums, and eyes. Because not many doctors are aware of the symptoms or diagnosis, it is known in the chronic community as an invisible illness. It took three months of ER visits, pain, hopelessness, and fear before my family was able to find Kylie the help she needed. 

Kylie stretches in the dance studio before her solo practice. We didn’t know at the time that EDS was the reason for her extreme flexibility.

I began this project before my sister’s body was taken over by EDS . It was originally intended to be a photo essay for my long-form photojournalism class showing how dance was an outlet for my sister’s anxiety and depression. I had no idea that just a few weeks into the project she would no longer be able to walk or lift her arms, let alone dance. 

Kylie screams in pain at Riley Hospital.

At first, I tried to continue documenting what was happening. I’d heard of so many other photojournalists that documented their own family’s struggles as a way to understand and process the situation. And I desperately wanted a way to cope with what was happening and understand why it was happening to us. 

My mother rubs BioFreeze on Kylie’s back in hopes to relieve her back pain. Kyle also has severe scoliosis. The 52 degree curves in her spine was another symptom of EDS.

I quickly learned that what worked for some photojournalists most definitely did not work for me. Every minute my hands were free was a minute I could have been helping her. I very rarely got my camera out. I missed so many classes, I considered dropping out. It was difficult for me to find importance in anything else when I knew what my sister was going through.

My mother helps Kylie with a drink of water at a hotel in Cincinnati. The next morning we visit Cincinnati Children’s Hospital to be admitted into their pain management program.

After months of ER visits and countless doctors appointments, hospitals began rejecting us as a “non-compliant family”. We were turned away because we wouldn’t stop asking for help and they didn’t understand how to treat her. To them, she was making it up, addicted to pain medication. Eventually, she was accepted into a pain management program at Cincinnati Children’s hospital that specialized in children with EDS and chronic pain. We were very skeptical at first, but those doctors in Cincinnati ended up being the best thing that ever happened for my sister.

After six weeks she began walking again. 

Physical therapists help Kylie walk across the floor of the Indianapolis Zoo aquarium.

And over the next few years my family began healing. 

Kylie leans back in relief during her aqua therapy session.

Kylie lies in bed with her dog, Sam.

These photos were taken almost three years ago now. I share them on this blog because they represent a part of my life that has impacted me as a human being and as a photojournalist. What my family experienced was awful. It was the hardest thing I’ve ever been through and I am still learning how to cope with the effects it had on my mental health.

Above everything that happened, this experience has helped me develop a compassion for
people that extends beyond familial ties. It took me a long time to work through my own trauma from this experience. My sister’s story motivates me to get better at this craft so that maybe my storytelling can help people understand others like my sister.  Now, I am excited to begin freelancing in my hometown so that I can take the time I want to pursue stories like hers. 

“Having these illnesses can make me feel really small some days. But other days I feel limitless. Some days I feel like I don’t have any control over my body when other days I feel like I can conquer the world. I think it’s really important to know that you are not your illness. You may have this illness, but this illness will never have you.”


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