People with invisible disabilities fight for compassionate understanding

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Upon waking up, Cole Ezra detaches the pouch containing a milky cream-coloured liquid from the IV pole beside his bed and hooks it into his backpack. Sloshing inside the pouch is a life-sustaining formula that delivers 75 per cent of the hydration he needs every day into his intestine through clear tubes. He carries this backpack everywhere he goes and relies on its nutrients for 18 to 20 hours a day.  

Ezra lives with a multitude of chronic illnesses stemming from an unknown genetic condition, yet many of these are invisible to others. In public, Ezra does not appear disabled. It’s not until you get to know him that you notice his subtle differences.

People with invisible illnesses regularly find themselves having to prove their disabilities in order to be believed or validated, a process they say is emotionally taxing when done repeatedly. Pain-related conditions make up the most common type of disability in Canada, affecting almost eight million people, according to a Statistics Canada report. 

Health Canada predicts a 17.5 per cent increase in Canadians with chronic pain by 2030. Those living with invisible disabilities may face obstacles not immediately recognized by the people around them, but that does not make their realities any less real.

At 20 years old, Ezra dedicates much of his life to managing his conditions. He takes 13 medications and sees a doctor an average of twice a week. With over 15 diagnoses, a mild cold could mean a trip to the hospital for oxygen.

“In 2022, I spent a total of three months in the hospital. But I was denied genetic testing by the government,” Ezra says. 

“The government will spend money on my hospitalizations but won’t on my diagnosis. Because in their eyes, I am not sick enough to qualify for testing. It’s very frustrating.”

Dr. Parm Bisla, owner and chiropractor at Pain Free Health Clinic in Richmond and South Surrey, finds fault in an overworked healthcare system. Waitlists for specialists often span months, leaving patients waiting for answers. 

“Patients may feel as though they hadn’t been diagnosed correctly. Doctors can only do so much. There [is an] extra mile to get a certain imaging or blood test done,” Bisla says. 

“It’s hard for someone because they want an answer right away, but there’s thousands of diagnoses out there.”

When he was eight, Ezra’s doctors diagnosed him with intestinal dysmotility, a condition weakening his muscles and impairing his ability to swallow, digest, and absorb nutrients from food. 

He spent April 2020 to November 2021 bedbound, when his health deteriorated to the point where he couldn’t leave his house. That April, Ezra went to the doctor. He struggled to eat and rapidly lost weight. They referred him to an outpatient eating disorders clinic for assessment.

“It felt like a slap in the face because I was trying to eat so badly. They watched me eat in front of them and puke for a test I had to do, but they wouldn’t believe me,” he says.

On other occasions, when he went to the emergency room for low heart rate and thyroid concerns, doctors ordered pregnancy tests to explain his fluctuating weight. As a trans man on testosterone, it’s nearly impossible for Ezra to become pregnant.

Although it’s gotten easier with time, he still struggles to advocate for his accessibility needs.

“I worry that I will be perceived as entitled, because it’s not always obvious,” he says.

One of Ezra’s biggest frustrations is the expectation that he and other hard of hearing people will always lipread. He faced backlash for requesting closed captioning at his high school movie nights, a feature he needs to fully experience movies.

“It would be such a battle for people to understand that the closed captions were more than just me liking them,” he says.

Like Ezra, Kwantlen Polytechnic University student Katelyn Watson has a rare genetic condition that causes her to live with an invisible disability.

She endured years of unexplained pain and injuries before doctors eventually diagnosed her with Ehlers-Danlos syndrome, a connective tissue disorder affecting the joints, skin, and blood vessels. Watson later received diagnoses of dysautonomia and ME/CFS, commonly known as chronic fatigue syndrome.

Chronic pain patients make up 30 to 40 per cent of Bisla’s clinic. A lack of education and dialogue on chronic pain contributes to patients waiting years for a diagnosis, he says.

“Patients come to us because they’ve fallen through the cracks,” Bisla says. “Some of them took 10 years to get diagnosed after they’ve done their own research.”

Watson’s family doctor initially dismissed her symptoms as anxiety. She pushed for further testing, knowing something wasn’t right. A 24-hour Holter monitor test revealed Watson’s sleeping heart rate reaches 150 beats per minute, more than double the healthy range.

She experienced classic symptoms of dysautonomia, a condition causing abnormalities in heart rate and blood flow to the heart, lungs, and brain. Watson began dealing with daily fatigue, dizziness, and rapidly changing blood pressure in her teenage years. She remained misdiagnosed with anxiety as her symptoms progressed. 

Watson’s chronic symptoms keep her housebound 90 per cent of the time. She plans her weeks around her disability and adheres to a consistent daily routine. If Watson makes plans to leave the house, she does so knowing her body will need recovery time afterwards. 

“Fatigue feels all-consuming and has taken over every aspect of my life. It’s the biggest thing I deal with right now,” she says. “I don’t want this to become my whole life, but it is.”

Shifting to online learning during the pandemic came as a blessing in disguise to Watson. She could learn from home at her own pace, without the added stress of advocating for classroom accommodations other students may not understand. 

This left Watson wondering if the shift to online, self-paced learning was possible, why she and other students with disabilities had been denied those same educational alternatives. Frustrated and wanting accountability, she wrote a letter to KPU’s President Alan Davis, Rajiv Jhangiani of KPU’s Teaching and Learning Commons, and former Vice President, Students, Steve Cardwell. 

Watson met with Jhangiani and Cardwell to ensure learning would remain accessible for students with disabilities when on-campus classes resumed. She joined KPU’s Accessibility Committee as a student representative to advocate for these changes, with a particular emphasis on students with invisible disabilities like herself.

Watson continues to learn online. This past semester, she took a self-paced class through KPU and another through Thompson Rivers University. Completing her degree from home means she can take breaks to lie down as frequently as she needs. 

Still, when Watson leaves her house, she fears being accused of faking her disability.

“I have so much anxiety about not being believed that [it] has prevented me from doing things or using resources that are available,” Watson says. 

“For example, I got a Sparc BC Parking Permit a couple years ago, and I didn’t use it even when I needed to for at least six months because I was so scared of harassment.”

Her fears were confirmed when she travelled with her family during reading break this past semester. As she prepared to enter security at the airport with her walker, an employee asked if she could step through the metal detector unassisted. When she could, he asked if she really needs the walker, or if she just uses it to skip lines.

“I feel like so much of what I experienced is because I don’t look disabled, because I don’t look old enough to be sick. I’ve been treated differently,” Watson says.

It’s situations like these where Watson feels she needs to be alert and ready to defend herself, which becomes emotionally taxing. It’s also why she decided to get a collapsible cane, so people on public transit will know to offer her a seat, she says.

On that same vacation, Watson says the airline stored her walker improperly and damaged it. They offered her $300 in compensation, but she wonders how it happened in the first place. 

Damaged or lost mobility aids happen frequently enough that the United States Department of Transportation now requires airlines to report when it happens. In 2019, or the first year of reporting, airlines mishandled 10,548 of the 685,792 wheelchairs flown. 

Watson felt comfortable enough to use her walker on vacation because she knew the chances of running into people from her high school were slim. Travelling meant she got to avoid the awkward conversations about why she now uses a walker, but not the advocating she does for herself. 

The reality of living as a person with invisible disabilities is the burden to educate others will always fall on her, she says. Even during times of relaxation, Watson prepares to explain her conditions to others.

The general population thinks of disabilities as something recognizable, Watson says. She experiences this narrow assumption first-hand. 

Both Ezra and Watson know their conditions are incurable. They will live with them for the rest of their lives, and they hope the public finds compassion for everyone with disabilities, visible or not.