The Invisible Disability Association has designated the third week of October as Invisible Disability Awareness Week, which marks its 10th anniversary this year.
This year’s Invisible Disability Awareness Week runs from October 15th to 21st.
An invisible disability is a condition that is not outwardly obvious but affects daily life.
Examples include diabetes, multiple sclerosis, Ehlers-Danlos syndrome (EDS), epilepsy, depression, and autism.
Kylie Herman (left) and Cadence Herman (right). Courtesy of Invisible Illness Alberta
Kylie and Candence Herman run the Invisible Illness Alberta social media accounts, where they share their experiences living with invisible illnesses such as EDS and Postural Orthostatic Tachycardia Syndrome (POTS).
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“I share our journey living with Ehlers-Danlos Syndrome and multiple other similar conditions for a few reasons,” Kylie said. “Firstly, it was because I was hospitalized so often and it was easier for us to post something rather than my husband texting me constantly.”
Kylie Herman in hospital. Courtesy of Invisible Illness Alberta
“[Then]we started sharing about our illness to make more people aware because it’s pretty invisible, and when we’re seen in the community, people see us as healthy people, but that’s not always the case,” Kylie said. “And when we were first diagnosed, it felt like we were the only ones. We had no one, we had no community. We just wanted to be heard. We wanted to be understood. We wanted to be believed.”
Cadence Herman outside the Mighty Millions lottery venue in 2023. Courtesy of Invisible Illness Alberta
Candence, a Stollery Mighty Millions lottery winner, said social media was helping people find the right diagnosis.
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“It’s brought awareness to the disabilities[we have]and people are like, ‘Oh, I guess I have that disability because I’m all of those things,’ whereas my whole life I’ve always been told, ‘You seem OK,'” Cadence said.
Image from Invisible Disability Awareness Week. Courtesy of the Invisible Illness Association.
Jess Stainbrook, executive director of the Invisible Disability Association, said the awareness week was meant to encourage conversations about invisible disabilities.
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“(We) want to raise the level of awareness and advocacy of what’s going on for people living with invisible disabilities.”
Jess Stainbrook at the last Invisible Disability Awareness Gala. Courtesy of Invisible Disability Association
Stainbrook added that many people with invisible disabilities aren’t believed and are simply told they are faking it.
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“(They) may not believe you because they can’t see it right away.”
Previous speakers at the Invisible Disabilities Awareness Gala. Courtesy of the Invisible Disabilities Association
The Invisible Disabilities Association will be hosting a gala on October 21st at 5pm to further raise awareness of people with invisible disabilities and to present awards to outstanding people in the invisible disability community.
Lauren Pires. Courtesy of Speaker Slam
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Lauren Pires is the first Canadian to receive the “you LOOK good” award, sharing her experience living with Central Core Disease, a condition that leaves her with 33% of the muscle strength of the average person.
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Although Pires was born with the condition, he didn’t realize he had it until he was in his mid-to-late 20s.
“When I realized that, I was shocked, but at the same time, it was also shocking and exhilarating to know that I’d lived a pretty fulfilling life.”
Pires said growing up, he avoided talking about his disability and tried to hide it.
“For a long time, I tried to hide my disability as much as possible and was really scared that people would look at me differently or see it as a weakness or an excuse,” Pires said. “And then to finally be able to open up about it publicly was such a liberating feeling.”
Lauren Pires. Courtesy of Speaker Slam
Pires said she learned that if you put your mind to it, you can do anything.
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“People are stronger and more resilient than they realize. There are so many things I thought I would never be able to do, but I have done them because I chose to, because I wanted to.”
Alberta disability advocate Greg McMeekin says awareness weeks like this provide an opportunity for education and understanding.
“It creates conversations. It creates education. And people should know that it can be hard to realise someone has a disability. And really, it just brings awareness and hopefully brings about a change in society and society’s general attitude towards disability. People with invisible disabilities are just like anyone else.”
Kylie Herman (left) and Cadence Herman (right). Courtesy of Invisible Illness Alberta
“My illness is not invisible if people take the time to listen,” Kylie said.
She added, “Family and friends of people with invisible illnesses: believe them. Listen to them. Even if you don’t understand, just let them explain. Let them listen. Let them ask questions.”
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People with chronic illnesses “don’t have to suffer in silence,” Kylie said.
Cadence Herman (left) and Kylie Herman (right). Courtesy of Invisible Illness Alberta
“Surround yourself with people who advocate for you and who will champion you,” Cadence says. “Surround yourself with people who brighten you up and bring you joy,” Kylie says.
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