If you saw Lisa Walters a couple of years ago, she might have been typing away at a coffee shop, sipping a latte, seemingly living the dream as a newlywed blogger with great style and a cohesive Instagram feed. The progression of her chronic illness has meant most of her writing is now done at home as her mobility aids become larger and her fatigue becomes more demanding. This reality led Walters toward becoming a chronic illness and disability advocate—a path that looks a little different than the future she expected.
Walters always pictured herself working her way up through the ranks at Memorial University, traveling, maybe publishing a book or two. She spent most of her twenties dealing with a multitude of health issues and diagnostic tests while trying to figure out what was happening with her body before arriving at her latest clinical diagnosis of Hypermobile Ehlers-Danlos Syndrome (hEDS). The Genetics Home Reference website describes Ehlers-Danlos Syndrome as “a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening complications.”
She said, “Since getting more answers and having my symptoms progressively get worse, my life has changed a lot in other ways. I can’t work right now because we never know when I will be feeling okay or for how long. I could wake up feeling fine and then ten minutes later I could be down for the count. I have pretty bad chronic fatigue, and I also have injuries and mobility issues with each of my limbs, even though the severity can vary day by day, which really impacts what I can do.”
That lack of familiarity and the stigma around discussing disabilities and chronic illness leaves her justifying her lifestyle, especially when others tell her she doesn’t “look as sick” as expected. This is less of an issue these days as Walters now has to use mobility aids whenever she leaves the house, but she says it’s really unfortunate that it takes a physical “prop” to make people accept how sick someone is, and the well-meaning phrase can feel like it’s downplaying her reality.
“I am sick, I have chronic pain, I dislocate tendons and joints on the regular, I get violently stomach sick sometimes, the list goes on, but those aren’t things you can plainly see just by looking at me,” she said. “Our physical needs can change very often. It seems really confusing to some people that I might be okay to walk for a few minutes unaided one minute, then a half hour later need my crutch, and then maybe an hour later I need my wheelchair, and then I can be walking unaided again for a bit. That’s just the nature of lots of chronic illnesses and disabilities, and it might seem strange but it is actually my normal. What mobility aids and braces I use depends on how I’m feeling at the time and what specific situation I will be in. I know lots of people who get called out for that and are told they are faking, because some people can’t register that things can change so rapidly for us. But they can, and they do, and we shouldn’t have to fear comments or harassment because of that.”
Walters has written about her decade-long experience on her blog, Damsel In A Dress, since 2013 and hopes her humour-tinged content will “normalize the conversation about chronic illness and disability.”
“Writing is my biggest outlet. It 100 per cent helps me process all of the changes happening and all of the serious stuff going on in my life. I like to be in control of how my story is told. I don’t want people to be gushing over me like, ‘aw, sin, how sad that you’re sick,’ so I tell my story in a way that doesn’t often provoke that sort of response,” she said.
She says disabilities are a huge part of life and should be talked about as easily as people will talk about work or TV shows, but she wasn’t always comfortable putting everything online. Initially, her blog was a secret. She didn’t share links on her social media, and she doesn’t think her name was even attached to it. Regardless, it started gaining interest. After doing an interview with Huff Post Live, she “ripped off the Band-Aid” and accepted she was a blogger.
“I still am scared by it sometimes, but over the years, I have received so many messages from people who are also sick and also feeling the same feelings as me, and they tell me how much my words have helped them. Probably the best compliment I ever get is when someone tells me that I found the words they couldn’t find. That keeps me doing it,” she said.
In 2019, Walters started AccessYYT, a movement across multiple social media platforms to share info on “accessible places, events, and activities in St. John’s and surrounding areas, and [bring] attention to local accessibility barriers.” Acknowledging the lack of accessibility can cause some government employees, business owners, and event planners to feel defensive, but Walters thinks it is important for people to start taking accountability for their inaccessibility.
Business owners like Karen at the Round Da Bay Inn in Plate Cove West give her hope. “She just runs with it and looks at it all as a great way to make their business better. They are collaborating with disabled people, making physical changes to their B&B, and now implementing all of my suggestions to make their webpage and social media more accessible.”
She says there are a lot of improvements that need to be made on the government level around accessibility, wait times to see specialists, and consistent support for people navigating the healthcare system. Then there’s the issue of architectural preservation vs. modernization when it comes to heritage status—a particularly acute problem in St. John’s. Walters says much older cities, like Breda in the Netherlands, are setting a great example of finding innovative inclusive solutions that are able to preserve the integrity of the buildings.
Walters highlights The Rooms, Manuel’s River Interpretation Centre (you can loan out an off-roading wheelchair), and Paul Reynolds Community Centre as great local venues for people with disabilities. The Rec Room at the Avalon Mall is her go-to spot for a night out. “I can independently hang out there without having to rely on other people to be next to me and helping me,” she said.
Overall, Walters just wants people to be aware of how “tricky” life can be with chronic illness.
“You can have such a wonderful, fulfilling life as someone with a chronic illness, but your life will still be tricky. We can’t always do the things we want to do, we have to cancel plans last minute quite often, and our lives can be rearranged way too many times because of this thing we have no real control over. I want people to know that they shouldn’t take it personally if we bail on something, we probably aren’t just making up excuses, and we could use a little extra compassion sometimes.”