The Unheard Patient

Some people experience a very different healthcare system

By Jane Harris

My wake-up call came on June 22, 2013, when Victim Services volunteers dropped me off at a local emergency room after a violent assault in which I was whipped and choked, my neck cracked and my head split open. Nurses left me bleeding in the waiting room without medical attention for over four hours before moving me out of sight. By the time the ER doctor stitched up my head, I’d been bleeding for seven and a half hours. As he stitched, he lectured me on domestic violence. Nobody bothered to do a CT scan. Nobody checked the neck injury. Nobody examined the open wounds on my back, arms, legs and neck. Nobody checked my blood pressure. Nobody even offered me a glass of water, let alone the IV that I likely needed.

“They probably thought you were a marginalized person,” explained a friend who works in healthcare when I asked her about it. She thought her explanation made sense—that socially marginalized people shouldn’t expect the same kind of care as “regular” people.

The experience in emergency was just the beginning of my medical nightmare. Within days I was seeing white lightning bolts flashing through my eyes from inside my head. I started forgetting things, couldn’t walk very far, slurred and scratched for words and could not retain complex thoughts.

Doctors, nurses, even receptionists—people who would have thought me competent before—now gave me sad, pitying looks. I was too ashamed to tell them I had no food in my house unless my kids dropped off a bag of groceries, or that I didn’t have money to get to a specialist in Calgary.

More than once I considered putting on my coat, walking to Lethbridge’s famous railway bridge and jumping off. I didn’t. Later, I would find out that four people did jump off that bridge to their deaths in 2011. I wondered how many were marginalized Albertans unable to get the help they needed.

After the attack I couldn’t shake the feeling I was locked in a box, screaming for help, but no one heard me. Because my attacker was also my husband, and because my injuries affected my thinking and speech, healthcare practitioners kept treating me as someone not credible enough to tell my own story. Nobody was listening.

People in the system seemed to make assumptions about me. It started in Emergency, where the nurse did not ask what had happened. She assumed my husband was a run of the mill domestic bully and that my head was cut open in a fist fight. These notions determined where I was placed in the ER triage. Nor did it end there. Assumptions also affected the treatment prescribed when I showed up at the doctor’s office a few days later and he saw for the first time the bruises over more than 40 per cent of my body, the head and neck injury, and my symptoms of post-traumatic stress.

Sure, my family doctor wrote down where the bruises were and checked to see if I could walk straight. He booked a CT scan and x-rays. He seemed sympathetic, too—except when he began talking about my “fatal attraction” to being beaten. He would go on talking about my “fatal attraction” until we parted ways early in 2015. When I showed post-traumatic stress symptoms—zoning out and reliving the trauma again and again—he said I shouldn’t “let myself” get so wired up. I should move on with my life. He wondered aloud if my breathless speech was a symptom of mental illness. When I said I was afraid of winding up homeless, he agreed I would probably always be poor. The bone-cracking pain I felt at the injury sites he dismissed as migraines. I pointed out a chart on his computer that showed I was an inch and a half shorter six months after the attack. He said, “That’s interesting. Have you started slumping?” Did he think I was exaggerating, or imagining my injuries? Did he think I was angling for sympathy or a disability pension?

Nobody bothered to do a CT scan, check my neck, examine the open wounds on my back, arms and legs, check my blood pressure. Nobody even offered me a glass of water.

My family doctor’s smiling staff told me to “stand here,” “go there” and “sit here.” They seemed to think I was going to wander off and get lost. Though I arrived at the office on time, I was often left sitting in the waiting room for an hour or two before seeing the doctor. Did they assume I no longer had anything important to do?

Some of my symptoms were getting worse after a year, and I asked to see a psychiatrist. When I finally got an appointment, the bemused doctor read the referral letter to me out loud. The reasons given for my being referred included that I had once been politically active and that I had filed a successful complaint to the Alberta College of Physicians and Surgeons. The letter also said I talked fast, suffered from migraine headaches and had “legal troubles.” The letter did not say I was the victim of a violent crime. It did not say I had requested the appointment. It did not mention tests confirming damage to my visual memory or my symptoms of post-traumatic stress. The psychiatrist was kind, but he was swayed enough by the referral letter to ask me why I “needed” to see my injuries differently than my doctor did. I went home feeling contaminated and shamed.

Did I deserve this treatment? I wasn’t sure. But I knew I didn’t like it. I tried to grab back respect by hiding how desperate and sick I was. I’d throw on a business dress, slap on lip gloss and do my best to cover up the fact that I’d been beaten, or that I sometimes slurred my speech, woke up terrified, was tired all the time and couldn’t remember where I put things. I tried not to look crazy. I got so good at it that I scored “mildly depressed” on the inventory I took at Foothills Hospital. When I got home, I resumed hiding away in my room. Because I had no income, my thinking often involved whether to continue into homelessness or to end things by jumping off the railway bridge.

Later on, when I was well enough to look into the difficulties I had experienced with the healthcare system, I found that my reactions to increasing marginalization were fairly typical. Research by the Alberta Disabilities Forum shows that disabled Albertans with mental health issues start to believe they deserve poor treatment. To avoid further marginalization, they keep mental health problems a secret.

The problem is clearly not all in their heads. Deanna Williamson, chair of human ecology at the University of Alberta, led an investigation of low-income Canadians’ experiences with health-related services. Her team’s study, published in the journal Health Policy in 2006, found that low-income Edmontonians and Torontonians tended to avoid healthcare workers who were abrupt, rude, indifferent and judgmental. Study participants said they quit asking for help when staff in clinics and helping agencies didn’t listen, forced them to tell their story multiple times in front of strangers or mistreated them in other ways. They also felt that workers expected them to beg for publicly funded services.

Even if they qualified for help, many study participants couldn’t access health-related services because they weren’t near a bus stop or they couldn’t afford to travel to the appointment. Some services were only open a few hours a week and had long lineups. In other words, some Albertans can’t afford to buy a bus ticket or put gas in the car, let alone rent a hotel room in order to keep an early morning appointment with an out-of-town specialist. Others, especially the working poor, can’t always get to a community mental health clinic when it’s open.

Some healthcare workers may be too stressed and overworked to care. Kelly Maguire of Lethbridge worked in home care for 20 years before giving up her juggling act between clients’ needs and the funding maze. “I saw a great number of people who were marginalized and isolated, whether it was from a brain injury, dementia or cancer,” she told me. Maguire says she “found it frustrating that there is a system in place that ensures a driving licence can be suspended after a seizure, for example, but that the same level of sharing information is not applied to ensuring families know what resources and supports are available for the short term and long term.”

Even middle-class patients with good jobs can become marginalized. Maguire remembers a professional woman, who seemed okay after a car accident. Never suspecting she had a brain injury, she carried on with her plan to fly to the UK to deliver a paper at a conference. Alone in a hotel room in London, she couldn’t remember whether to put her bra or her blouse on first. She came to the terrifying realization that something was wrong with her brain. “Her intellect was always intact,” Maguire says, “but some very specific parts of her brain were injured, [a fact that was] not identified until months later. She thought she was going crazy. Many medical professionals told her family she was just seeking attention.”

The system is designed by people with food in their fridges, money in the bank, sick pay and disability benefits. It works best for people who are the same.

I had a similar experience about six weeks after I was injured. I walked into the Canada/Alberta Service Centre in Lethbridge for the third time in three weeks. It was a morning in early August 2013. I knew I needed to make some money. The first two times I had tried to talk to someone there, the staff were too busy to help and the circular layout of the room confused me, so I left. On the third try, I managed to make it to the front of the lineup. I sat down in front of a woman behind a desk. She asked me what I needed. I said, “I don’t know.” Then I burst into tears and went home. Nobody stopped me.

I spent that summer picking apples and pears off the ground and gathering bottles to take to the depot to get money to buy bread. Fortunately my daughter also brought me groceries every couple of weeks. It was another eight months before anyone told me I qualified for the Alberta Adult Health Benefit. That meant I didn’t need to stretch my thyroid medicine an extra week each month, but it did not fix everything.

By the spring of 2014, I had nearly given up on getting better. That was when I came closest to walking off the railway bridge. I wish I could say that a saviour from Alberta Health swooped in and rescued me. I wish I could say the system finally worked. I wish I could say I am “all better.” But I can’t.

I am still unable to turn my neck all the way to the left. I still can’t ride in an elevator by myself. I still walk sideways sometimes and scratch for words when I am nervous. I still have days when I am convinced I have no future. Sometimes I still feel marginalized.

But I have a new family doctor. I have three supportive children. I am recovered enough to work as a journalist again, and perhaps that is why I am still here. I am making a career of asking questions people don’t want asked. I will go on asking those hard questions. I am not ready to stop challenging assumptions.

Most Albertans assume our complex web of health services serves everyone, but my experience has proven to me it does not. My conclusion: It is a class issue. The system is designed by people with food in their fridges, money in the bank, sick pay and disability benefits. It works best for people who are the same. People who are perceived as being on the margins are given different and insufficient access and service. I know that Albertans with injuries similar to mine sleep on mats in homeless shelters every night, and die sooner because their manageable illnesses are not treated. I know that some commit suicide when shame and assumptions keep help away.

Money alone won’t help these Albertans get well. We need to ask the right questions: “Can you afford this prescription? “Can you tell me everything that happened to you tonight?” “Do you need a ride into the city to see this specialist, or bus fare to get to the mental health clinic?” It would be a start. #

Lethbridge-based Jane Harris is the author of Finding Home in the Promised Land (Shillingford Publishing, 2015), a memoir.

 

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