NP was doing online physical therapy in her apartment when her central line — a medical tube that keeps her alive — popped out of place under her skin. For two days, she tried to go into the ER but was refused treatment because of COVID-19.
She nearly died.
“I had no way to get any blood sugars, so my blood sugar dropped, and I was hypoglycemic,” said the young woman, who asked to be identified by only her initials out of concern for health care access several years after this story was published. “I became unresponsive, so we had to perform [an] emergency medical treatment on me to wake me up.”
NP was diagnosed with Ehlers-Danlos syndrome, or EDS, a chronic genetic illness that causes the connective tissues to form improperly. Without access to medical care, NP was forced to drop out of a program at her dream school two years after her diagnosis.
NP’s story is one of many. According to the National Health Council about 50% of American adults have a chronic condition, and so do 8% of children ages 5 to 17. Approximately 1 in every 5,000 people around the world is diagnosed with one of the 13 subtypes of EDS, according to the National Institute of Health.
Like other young adults with chronic illnesses, NP is considered especially high risk during the pandemic.
EDS has left NP’s gastrointestinal tract unable to digest food. Instead, she relies on a central line connected directly to her heart that injects what she describes as a “super broken down” nutritional substance called TPN straight into her bloodstream. This is the same central line that popped out, which would normally be an easy fix if COVID-19 was not rampant.
Her spine struggles to support her neck, and because of circulation issues, if she stands up for too long she could pass out. The postponement of outpatient procedures and surgeries for these symptoms has taken a toll on NP’s health.
Medical facilities postponed the surgeries and other procedures she usually has on a regular basis, deeming them to be “elective,” and have moved most of her medical treatments online because she is high-risk.
“Elective surgeries is kind of a misleading term,” NP said, pointing out that even spinal surgeries and organ transplants are considered elective even if the situation is urgent because they are not immediately life or death.
She was able to cope for the first couple of months of the pandemic, she said, noting that she normally could just get the dislocating joints fixed. Now she fears that her inability to seek treatment may be causing permanent damage.
“But at the end of the day, like if I get COVID,” she said, “it’ll kill me.”
Because contracting COVID is especially life-threatening given her disease, only recently has NP’s doctor permitted her to leave her house, and even then she must stay inside the car when she goes anywhere. “I’ve not been inside a store since March,” NP said, explaining that she has to ask for someone else to go inside for her.
“I didn’t think about how many times I went to the store [pre-pandemic] and how much independence you lose by not being able to do anything for yourself,” she said.
When asked how this affects her mental health, NP laughed and commented, “How does solitary confinement affect a prisoner’s mental health?”
December 2025 Editor’s note: This story was corrected to clarify information about NP’s central line device and the impacts of her disease.