Recently, I learned what it means for a family member to be diagnosed with breast cancer. Overnight, her life became a whirlwind schedule of doctor appointments, surgeries, chemotherapy and medications. The hospital became a kind of second home and his staff moved mountains in their effort to save his life.
Our provinces’ health systems know how to care for (most) people with cancer and other acute health problems that pose a risk of imminent death. It may not always work smoothly or flawlessly, but it has the ability to perform life-saving gestures.
These health conditions may not necessarily lead to immediate risk of death. However, they cause a continuous deterioration in the quality of life that sometimes makes us feel as if find ourselves outside this mortal plane.
This includes conditions such as fibromyalgia, endometriosis, chronic depression, post-traumatic stress disorder, sciatica, chronic pain, and autoimmune diseases such as lupus and multiple sclerosis.
Together, these health problems affect millions more Canadians and cThe majority of Canadian society has billions more that cancer doesbut they attract comparatively little attention, empathy or funding because they are not considered fatal.
It is no coincidence that the health of nations is measured using birth rates, cancer statistics, number of deaths and life expectancy, but not quality of life. There is always an emergency that takes priority and moves people with chronic illnesses further down the list.
If we hope to have a public health system that takes care of us all, we must listen more carefully to the people most harmed by its inefficiencies: chronically ill and disabled Canadians.
As a person living with multiple disabling conditions, I know intimately how systemic failures force Canadians to fly in a medical holding pattern until we are finally sick enough to receive effective medical care.
That’s why I laughed when Canada House of Commons standing health committee, overwhelmingly white and male. He said he would conduct a study on women’s health.
Maybe I’m too tired of my experiences. It took 24 years of doctor appointments for my severe pelvic pain to be diagnosed as stage four endometriosis and adenomyosis, and 22 nearly simultaneous years to finally get the x-ray that showed my back pain was due to a broken facet joint. and two slipped lumbar vertebrae suffered during high school volleyball drills.
During those decades, I was told that providing me with proper care would be too burdensome on the system. Maybe, they said, all he needed was some antidepressants and a treadmill.
So I was not surprised when, during the parliamentary health committee meeting on November 29, endometriosis meetingLiberal MP Marcus Powlowski, a doctor by training, jokingly admitted to having received at most one hour of endometriosis training at school before suggesting to the committee that the condition may be overdiagnosed.
Those who straddle the political and medical realms should know where the cracks are. But very often it is those same people who are least likely to notice or recognize them.
Political systems and medical systems mirror each other because they are both based on, and continually shaped by, deep-rooted paternalism– Our System Daddy likes to be the hero but he doesn’t have the patience or ability to meet our daily needs.
Very often you like to tell people what is good for them (socially, medically, educationally and economically) without actually helping them. And that’s why we like to talk about people with disabilities, but rarely with them.
There is a saying in the disability justice movement: nothing about us without us.
It came after generations of policies and decisions made by people in power who assume they know what disabled people need because of what the political and medical systems say about them.
Making real systemic change in health care requires our leaders to listen to people with chronic health problems because they are the canaries in the coal mine. Disability is no exception; It is an everyday part of life.
The reality is that if you are not disabled today, you may be disabled tomorrow. And even if you never become disabled, you surely know or will eventually meet and love someone who is.
That is why it is in the interest of all Canadians to improve the system for those living in complex and often misunderstood conditions. We are all at risk of developing health problems that can expose us to inadequate care, unequal access to help, and a declining quality of life.
Tracey Lindeman is a freelance journalist who writes for The Guardian, Fortune, The Walrus and others. She is the author of BLEED: Busting myths and misogyny in endometriosis care. This article is reprinted from Policy options.
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