For over a decade, Sarah Lindsay has been living with two painful, chronic, and invisible conditions: bipolar disorder and fibromyalgia. Managing these conditions has opened her eyes to the importance of becoming her own number one healthcare advocate — particularly when the biggest challenge she’s faced is proving she is suffering and in need of care in the first place.
In 2006, 18 months after a misdiagnosis of major depression, Sarah was diagnosed with bipolar disorder. With the proper supports in place, she was able to manage her mental health throughout university. “When I left university and entered the working world, there were all kinds of new stresses,” she recalls. This new high-pressure environment took its toll, as did the fact that the medication she had been taking for nearly a decade was only meant to be a short-term solution — its efficacy began to fade, and she stopped taking it. Coming off the medications was met with a host of other effects: Sarah experienced withdrawal symptoms, including mood problems. “I had felt healthy and in control for the better part of a decade. Suddenly, the side effects were getting worse, and I lost that sense of control.” In 2016, Sarah lost her job.
“If there’s a section of our Canadian healthcare system that’s more misunderstood than mental health, it’s chronic pain.”
Thus began a two-year sick leave, during which Sarah began to experience inexplicable pain throughout her body. After consulting with her family doctor, who suspected rheumatoid arthritis, Sarah was referred to a rheumatologist. It was this specialist who diagnosed Sarah with fibromyalgia, a condition that causes your body to react to stimuli more than it should, resulting in widespread pain, fatigue, and muscle stiffness.
“If there’s a section of our Canadian healthcare system that’s more misunderstood than mental health,” Sarah explains, “it’s chronic pain. And specifically, chronic pain in women. You have to fight to be believed.”
Sarah’s condition was diagnosed because of a particular symptom she happened to bring up in the appointment with her rheumatologist: phantom swellings. Sarah describes these symptoms as feeling like her hands and feet are going to burst, though she doesn’t show visible symptoms. “I brought it up almost as an afterthought. But as soon as I mentioned it, my doctor gave me a questionnaire to fill out.” Since there is no perfect test to diagnose fibromyalgia, it is a “diagnosis of exclusion,” and not until all other possibilities are ruled out is fibromyalgia assigned, which often leads to delays in diagnosis and prolonged patient suffering. Symptoms can range from Sarah’s phantom swellings to full body aches, when the source of pain or discomfort is difficult to pinpoint. One of the major challenges with fibromyalgia is that the severity of complaints characteristic of the disorder are subjective, and therefore subject to doubt by even well-intentioned care providers.
And while the connection between mental health and chronic pain is not well understood, what is known is that fibromyalgia is often associated with mood disorders — although there is no proven causal relationship, occurrences of fibromyalgia in individuals with mood disorders are almost 1:1. The irony is that those who are forced to advocate even harder than most for proper care are already at a disadvantage due to reduced energy and a lowered sense of self-worth, common symptoms of depression and anxiety.
“The healthcare system takes acute pain — such as a broken leg — very seriously,” Sarah explains. “But if I go into the ER because I’m in a lot of pain, but I can’t explain why, it’s more difficult to triage and treat effectively.” Hospital emergency staff are busy and resources are limited, so when courses of treatment aren’t obvious, inexplicable pain can slip down the list of priorities.
“We’re fighting an uphill resource battle.”
If a patient is diagnosed with chronic pain, even providers dedicated to treating these disorders are hard to access. Months-long waitlists plague pain clinics, and a focus on treating symptoms once they’re already severe inhibits preventative, long-term care for the chronically ill. “The resources aren’t there,” Sarah says. “We’re fighting an uphill resource battle.”
In Sarah’s experience, you have to fight to be believed — and even then there’s not enough resources to go around. “As soon as you see an acute injury or illness, it’s like boom, boom, boom, you’re on the operating table. But when I have two chronic diseases, or ideate suicide, I have to prove to the medical system that I deserve their time.”
To proactively manage her condition, Sarah takes daily antidepressants and antipsychotics, in addition to following a strict sleep regimen, refraining from drinking and drugs, and staying highly attuned to the needs of her body at any given time.
This personal proactivity is essential, considering our country’s healthcare system is optimized to treat individuals once they’re already sick. There simply isn’t the time or resources available to keep chronically ill people on a path toward health, or even encourage the general population to be proactive about their health. This is a shame, considering the more illnesses we prevent and the better we become at managing chronic conditions, the less acute care we will need to provide, relieving a huge financial burden on our healthcare system.
“The deeper I get into the system, the more I realize I need to become my own advocate.”
This institutional lack of focus on long-term health objectives distracts many people from the potential benefits of getting access to their health records. In Sarah’s case, it was the innate, paternal trust we all place in our doctors, who at the end of the day are only human, and susceptible to error. “I had this blind trust that they were telling me what I needed to know,” she says. “The deeper I get into the system, the more I realize I need to become my own advocate.”
This is part of Dot Health’s #HealthStories series, where we highlight individuals from across Canada and their experience with the healthcare system in Canada as a patient, caregiver, or advocate.
Dot Health is a Toronto-based digital health company that believes health information belongs in the hands of its owner: you. Through our web andmobile app, we empower Canadians to own and control their health data, from clinics, hospitals, labs, and pharmacies.