By the time Stephenie Hashmi was in her mid-20s, she had achieved a lifelong dream — she was the charge nurse of one of Kansas City's largest intensive care units. But even as she cared for patients, she realized that something was off with her own health.
"I remember just feeling tired and feeling sick and hurting, and not knowing why my joints and body was hurting," she says.
Hashmi was diagnosed with systemic lupus, a medical condition in which the body's immune system attacks its own tissues and organs. She's had surgery and other treatments, but now, at age 41, Hashmi is often bedridden. She finally had to leave her job about six years ago, but when she applied to the Social Security Administration for disability benefits, she was denied.
"I just started bawling," she recalls. "I felt like, if they looked at my records or read these notes, surely they would understand my situation."
In the U.S., less than half of all people who apply for disability benefits — about 45 percent — are ultimately accepted, says Lisa Ekman with the National Organization of Social Security Claimants' Representatives. Getting a hearing takes an average of nearly 600 days.
"It is not easy to get disability benefits, and it's a very complicated and difficult process," she says.
It may become even harder for people like Hashmi, whose disability is difficult to actually see or measure. This spring, the Social Security Administration introduced changes to fight fraud and streamline the application process, including a new rule that removes special consideration given to a person's longtime doctor. Ekman says this is a mistake.
"Those changes would now put the evidence from a treating physician on the same weight as evidence from a medical consultant employed to do a one-time brief examination, or a medical consultant they had do a review of the paper file — [who] may have never examined the individual," Eckman says.
She says relying on these examiners who don't know the patient could lead to more denials for disabled people with complex conditions like lupus, multiple sclerosis or schizophrenia. These illnesses can affect patients in very different ways and may be hard for an unfamiliar doctor or nurse to evaluate. Eckman says more denials will lead to more appeals, which will increase the backlog.
That backlog started snowballing about 10 years ago, says Jason Fichtner; he's now a senior research fellow in public policy at George Mason University's Mercatus Center, but was acting deputy commissioner of the Social Security Administration back then. During the recession, he says, a lot of people who applied for benefits were disabled, but not necessarily unable to work.
"They can work, but when the recession happens, those are the first people who tend to lose their jobs and then they apply for disability insurance," Fichtner says.
There are now more than a million people across the country waiting for hearings, and, adding to the strain, the administration's core operating budget has shrunk by 10 percent since 2010.
Fichtner says the agency is obligated to weed out any and all fraud that it can — including the rare cases in which a patient's personal physician might be trying to tip the scale to get a patient benefits. Fichtner says the administration can still legitimately prioritize applicants, if its investigation shows that the patient's disability, although not obvious, merits it.
"For patients that are really in a dire condition and really have major disabilities, I don't think they have to worry about these rule changes," he says.
Fichtner acknowledges that the backlog needs attention, and says the agency has safeguards to monitor whether the rule is working as it should.
But in Kansas City, Stephenie Hashmi is still struggling with lupus, and still struggling to get disability benefits. She's increasingly pessimistic. After several rejections from the Social Security Administration, Hashmi's now appealing again. Her hearing is scheduled for November — of 2018.
This story is part of NPR's reporting partnership with KCUR and Kaiser Health News.