A Battle You Cannot See

It was a long time and a lot of doctors before I was officially diagnosed,” said Jenny Rydzewski, BSN, RN-BC, Infection Preventionist at Northwest Community Healthcare (NCH). At the age of 23, she was diagnosed with two chronic illnesses: Ehlers-Danlos syndrome and hyperadrenergic dysautonomia.

Both cause persistent pain and fatigue by disrupting the nervous system and affecting connective tissue. They are also considered invisible disabilities, meaning that they impact Rydzewski’s ability to work and enjoy everyday activities. On top of that, people can’t necessarily tell that she has a chronic illness.

Prior to her diagnosis, Rydzewski was often told to drink a cup of coffee when she felt extremely tired. Other issues like joint pain were explained away with phrases like, ‘oh, you’re just getting older.’ She was even written off by healthcare providers, including a nationally-recognized specialist in Rochester, Minnesota. She waited over a year to get an appointment with this physician and spent a full week on travel and testing. In the end, she was told that it was just an anxiety problem. It was devastating.

“I’m not crazy,” Rydzewski said. She knew there was something wrong, and she continued to search for answers. Finally, she was diagnosed with both hyperadrenergic dysautonomia and Ehlers-Danlos, thanks to a doctor’s somewhat unsettling stare.

“It was all because of how I was sitting,” Rydzewski said she was in his office with one leg twisted over the other. “He was looking at my legs and I thought it was super creepy, but now I get it. People with hypermobile joints just do weird things that are so classic for (Ehlers-Danlos syndrome) that we don’t realize is abnormal.”

Rydzewski’s official diagnosis meant she could apply for Family Medical Leave Act (FMLA) protections. FMLA is a law that enables people with disabilities to take off of work for medical appointments and treatments without the risk of being fired.