Doctors said her gangrenous appendix was just anxiety. She's not alone
Joy Spence, 21, says emergency rooms kept sending her home despite crippling pain
A woman who says she was repeatedly denied adequate emergency care last spring is blasting the Newfoundland and Labrador health-care system, saying she's been left psychologically scarred after being told several times that her gangrenous appendix was simply anxiety or constipation.
Joy Spence, 21, said she visited emergency departments at two hospitals in St. John's over the course of nearly two weeks this May.
What began as weakness and abdominal pain on her right side quickly deteriorated into blacking out from the agony in her torso.
But no matter how dire her symptoms got, doctors kept sending her home.
"They would just tell me, 'Your bloodwork's normal, there's nothing we can do.' They would send me home, then same thing again," she said. "I would go back again. They would get me to do the bloodwork, say everything's normal."
Ultrasound and CT scans apparently turned up nothing, but Spence, in such severe pain, says she had no option but to keep returning to the hospital, where she says she was eventually left screaming in a waiting room, ignored by hospital staff.
"If somebody doesn't help me, I'm going to die," she recalls wailing, watching doctors and nurses pass her by.
At one point, she was dismissed outright by a walk-in clinic nurse, she adds.
"Somebody said to me, 'I don't know what you expect me to do,'" she said. "'You're a healthy 21-year-old young female.'"
One night, she says, her boyfriend had to help her into an ambulance. Spence was in so much pain she couldn't stay conscious and stand on her own.
"I remember the man in the ambulance telling me … how often he sees other young women going into the hospital and seeing them be misdiagnosed and not taken seriously," she said, speaking through tears.
"He said that he would do his best to … get things going for me."
Spence says she went to an ER at the Health Sciences Centre or St. Clare's Mercy Hospital about 10 times over a 12-day period, beginning on May 21. She also visited her family doctor, who could do little except tell her to speak directly to the surgeon at Health Sciences Centre, she said.
Each time she saw a doctor, she says, she was sent home and told to dance around her living room or do yoga to cure what physicians believed was anxiety or sluggish bowels.
"I had so many laxatives," Spence recalls. "I would tell them … nothing's even coming out anymore. It's not just this, I don't think. But no, they were dead set on the constipation and only constipation. Like, it can only be that."
When dismissal kills
CBC News spoke to several other women who reached out to Spence when she took her story to social media last month.
Those women also described having the gravity of their symptoms dismissed and their illnesses misdiagnosed.
Mackenzie Angelo, 21, told CBC News that medical workers in Carbonear scolded her for wasting a doctor's time after a visit to the hospital for severe abdominal pain, which she says after two years still hasn't been diagnosed or adequately treated.
Another two women, who spoke to CBC News on a condition of confidentiality to protect their employment, spent months seeking answers for what turned out to be life-threatening illnesses.
One says doctors told her she was too "young and healthy" to have a serious illness, and visited ERs over a dozen times over the course of a year before her increasing pain and inability to have a bowel movement was finally recognized as a bowel obstruction.
Another woman, also ultimately diagnosed with appendicitis, was repeatedly sent home from the emergency room with pain medication and told she had ovarian cysts or endometriosis. She said it took five months for doctors to do any testing beyond bloodwork and pressing on her belly; an ultrasound and a colonoscopy, she told CBC News, ultimately saved her life.
Julia Brewer, a former paramedic, says Spence's story struck her as horrifyingly familiar. Her own mother, Peggy Brewer, was repeatedly told by emergency room doctors she was just experiencing stress in the three months prior to her ovarian cancer diagnosis in 2015.
By the time she was finally granted an ultrasound for her abdominal pain and swelling, Brewer said, it was too late — the cancer had spread.
"They found a tumour the size of a melon," Brewer told CBC News. "She was dying of cancer and nobody cared."
Brewer said nobody working at either hospital in St. John's took her mother's complaints seriously, dismissing her at every turn. While Peggy screamed in agony, one emergency room doctor went so far as to tell her to go home and not come back, Brewer recalls.
"You're being told by all these physicians and nurses you put your trust into not to return to the hospital — what do you do?" Brewer said.
"At what point do we stop telling women to stop being emotional? She's dead. That's not an emotion."
'Not on their radar'
Spence says doctors only began to take her seriously once she began vomiting in a Health Sciences Centre hallway. The contents of her stomach were green and black.
An older doctor walking past her happened to notice, stopping in his tracks. Spence says he immediately identified the issue as appendicitis.
At that doctor's urging, Spence was finally wheeled into an operating room, where she says her burst appendix — now gangrenous — was removed.
"I think when I walked into the room and they seen a 21-year-old young girl, they immediately dismissed me and thought that there couldn't be anything wrong with me," Spence said.
"I was not on their minds and not on their radar. And if they didn't have that preconceived idea of me, those thoughts wouldn't have been formed and maybe I would have gotten the proper care that I should have."
"The big picture here is that this is a systemic problem," says Bridget Clarke, advocacy co-ordinator for the St. John's Status of Women Council.
Medical research, drug development and scientific studies, historically, "have been by and large done by, with, and for men," Clarke said. "So that inherently creates a bias when you think about the care and treatment that's available for people, particularly women and gender-diverse people."
An ongoing shortage of doctors and nurses in Newfoundland and Labrador's health-care system only compounds the problem, she adds.
"Any time there is a social or economic crisis happening, there are certain groups of people who are bound to be disproportionately impacted by that crisis," Clarke said. If you're a woman, person of colour, or disabled, "your risk is greater to experience discrimination or potential harm as kind of a result of that crisis."
Gender bias not a known issue, ER head says
Numerous studies have shown that women are regularly ignored in health-care settings, and it's a pattern that extends far beyond Newfoundland and Labrador.
An editorial in medical journal The Lancet earlier this year laid the issue bare, citing multiple studies showing women are repeatedly subject to bias that affects their health. One recent Australian study, for instance, found that one in three women felt "dismissed and unheard" by health-care providers.
"The evidence is unmistakable: women are enduring delays in diagnosis, inadequate pain management, and disparities in access to appropriate care," the editors wrote.
A spokesperson for Newfoundland and Labrador Health Services said in a statement that the health authority does not "condone, nor do we dismiss any concerns related to discrimination within our facilities," and says anyone worried about the quality of care they receive can contact the authority's client relations office.
But the head of emergency departments for the St. John's metro region rejects the allegation that women are being dismissed because of their gender within his hospitals, pointing out that appendicitis can be difficult to detect in young women because its symptoms can mimic other illnesses.
Dr. Richard Barter, eastern zone clinical chief of emergency care for NLHS, says emergency room physicians are taught about gender bias in medical school, and doesn't believe that's at the root of the complaints heard by CBC News.
"I have not seen this or witnessed this in the emergency departments," Barter said. "We treat medical issues, not what your sex is, not what your age is ... [everyone is] put through the process of triage assessment, disposition and follow-up advice. So everybody's treated in the same way."
Barter says if the health authority sees enough women alleging they received inadequate care, its officials would look closer at the possibility of entrenched biases among medical staff.
"If we find that there is a trend for this, then we would go to the physician group and say we really need to sit down and see if there is an issue here we need to address, and potentially up our awareness and potentially do extra training in that area," he said.
"But as the clinical chief, I have not come across any complaints of this type that would lead me to suspect that there is a recurring issue here and there's a pattern."
There's currently no formal gender bias or diversity training for NLHS employees, says Debbie Molloy, the authority's human resources director.
But within the next month, Molloy says orientation for all new employees will include diversity and inclusion training, which will teach incoming medical staff about implicit bias. Molloy says hospitals also have regular awareness campaigns to remind employees about the potential harm caused by unconscious biases.
"We're trying to do [that] through education, to ensure that it's very top of mind for people — that they do really need to consciously think about how they're interacting with people, because your intention and your perception may be two different things," Molloy said.
Spence is still struggling to recover from her ordeal. Physically, she's now fine: her appendix was removed and her stitches have healed.
But she's lost an alarming amount of weight, she says, wakes up gasping in the middle of the night and can't stop herself from crying whenever she remembers the hospital.
"I've been losing a lot of hair," she said. "Mentally, it's just been a struggle."
Spence only received an apology from the health authority after CBC News requested comment and confirmed that Spence had done an interview — a move she says felt hollow and frustrating, since the manager who called her didn't give her an explanation about why she was repeatedly ignored while waiting to be admitted.
The ripple effect from her illness, and how she says she was treated when seeking care, has uprooted her life. She's taken a year off her studies in Memorial University's social work program and has lost her job. She's looking for trauma therapy, but now doesn't have the money to pay for it, she says.
"I think as young women we're always told what we're supposed to do, how we're supposed to think, and not to trust our instincts," she said.
"But most of the time … the gut instinct is right. I knew I was sick. I knew what was happening wasn't right, and I could have died if I didn't keep going back to the hospital.
"If I had listened to those doctors and went back home — what could have really happened?"
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