living with an invisible disability: 'i felt like nobody would understand or relate to me'

lauren pires was born with central core disease, a rare neuromuscular disorder that develops when some mitochondria in the cells are missing. because of her condition, her body works at roughly 33 per cent of the physical strength of the average person. pires lived with her disease for 20 years before being officially diagnosed and growing up without a lot of disease representation in the media, she often kept it to herself.

“the main disability icons, i would say, were rick hansen, who is amazing, who is a wheelchair user, and i have never used any mobility aids. and also terry fox, who is amazing but who’s known kind of for running, and i can’t run,” she said. “so, there was nothing that i could really relate to and there wasn’t really any language around disability at that time when i was growing up.”

even after being diagnosed, she still kept quiet about her disability despite having difficulties walking up flights of stairs, getting up from sitting positions on the ground or low seating or standing or walking for long periods of time.

“i felt like nobody would understand or relate to me. it was kind of hard to describe,” she said. “i actually didn’t hear the 33 per cent strength quantification until i was 26 years old, so i spent my whole youth and childhood and actually a lot of my adult life as well, just having no concept of how to explain it to people or even to myself.”

being at 33 per cent strength compared to others isn’t easy, but she manages. if someone were to have an accident and go from 100 per cent down to 33, they would have to relearn how to walk because of how different the disability is and how it affects her muscles.

“i’ve always been able to walk,” she said. “i was really surprised when i heard that because it made me think about all the different kinds of adaptations that i’ve just kind of figured out to move through my day.”

pires, now an invisible disability speaker on resilience, belonging and joy, had to learn to find her community without any help.

opening up in her early 30s

in her early 30s, pires joined a community known as speaker slam,an inspiration-speaking company where people openly share their own inspirational journeys. she joined the group and spent the better part of a year-and-a-half just watching as others shared their stories with the audience.

“every once in a while, i would see a speaker with a disability talking about their story and i was like, we can talk about it? what do you mean? i’ve never thought of talking about it,” she said. “and there was always something that i related to about their journey and so i thought, well, maybe that’s the point.”

prior to being a part of the community, she feared that if people knew about her disability, they would look at her differently, but she found the courage to share her story once others showed her that it can be empowering.

it even led her to meet others with the same disability.

“that’s not something i ever saw happening for myself before i started talking about it,” she said.

navigating life a little differently

because of her disability, pires has to walk through the world a little differently than others. she gets tired more easily, paces herself and commits to only a few things per week or per day that she knows she can handle, spending “a lot of mental energy” figuring out the most time-efficient ways to do things.

“if i’m going to have a really busy day or a couple of days, is that going to kind of take me out for the next day? or if i have a busy weekend, do i need to plan for a rest day or a slower monday?” she said. “i spent a lot of mental energy trying to figure out how am i going to do things … whatever needs to get done.”

she uses examples such as household chores and self-care. if she plans to vacuum her home, wash her hair and cook dinner one day, she will likely put off other chores, such as laundry, until the next day or until she has enough energy to slot them in.

she’s also had to plan her life around her disability. in university, pires studied media studies and public relations at the university of guelph-humber, but she’s also applied to york university and ryerson (now toronto metropolitan university).

“i’d been nervous about navigating those environments if i attended. i knew them to be sprawling campuses with buildings far apart, perhaps requiring me to move quickly between classes, which likely would have consistently tired me out,” she said.

but when she visited the campus in etobicoke, things were different. all the classes were in the same building. so her university choice was based not only on the program, but also on how accessible the campus was to meet her body’s needs.

“i didn’t consciously realize how big a factor accessibility played in. my decision until i discussed it on a podcast last year. the host asked if a guidance counsellor had encouraged me to find an accessible, small university or if i had figured that out myself,” she said. “my disability was so normalized that i created my own accommodations like that, without even realizing that having a disability or rather, having to account for accessibility barriers in many environments, shaped many of my life decisions.”

pires has also had to miss important milestones she wanted to attend, such as her childhood best friend’s son’s first birthday, because she worked a festival at the time and that work was so strenuous she needed days to recover.

dealing with stigma

people living with invisible disabilities are often hit with stigma because people simply don’t understand the difference between looking sick and feeling sick and that you don’t have to look like you have a disability for it to be taken seriously.

for pires, her experiences with stigma range from strangers to people she thought were friends. the first was an unwarranted comment under a media interview she did with citynews toronto for a fundraiser with the invisible disabilities association, posted on youtube. the comment stated, “so laziness is a disability.”

“i was like, what a terrible day you must be having to comment something like that, but also, you’re really missing the point,” she said, explaining that people don’t seem to grasp that having 33 per cent strength isn’t a choice or a failing. it just is and it greatly affects how you move through life.

another year during the same fundraiser, she posted an instagram reel giving followers a glimpse of a trip she took to paris with her brother. her goal was to show people her walking around paris while spreading awareness for mobility awareness month. the invisible disabilities association shared her clip on their platform and she got the “you don’t look sick at all” comment, along with others comparing their own chronic diseases to hers.

“they were like, ‘i have an autoimmune condition. it’s really hard for me to do anything, but you are prancing around paris,’” she said. “i really had to kind of remind myself … this person who has a disability must be having a difficult time with theirs and reminding myself of that, of course, disability comes in all shapes and forms and reminding them as well that disability is a spectrum and that chronic illness and disability and being sick are also all different.”

when comments do come, pires makes it a point of practicing empathy — even when the stigma comes from someone she thought was a friend.

she recalls getting an extension in university once because she had bronchitis on top of her everyday tiredness, which made it impossible to get her assignment done on time. she told a friend who knew about her disability that she got an extension, relieved that she had been given the time, only to find out later that the friend told someone else about the extension while disclosing her disability, making it appear as if pires was getting special treatment for her disease when she was just being treated equitably.

“that is kind of one of my closest stories of stigma that i faced from somebody that was like, i thought you were a friend and then you shared my disclosure, which was not meant to be shared,” she said.

living with things you can’t do

living with a disability that has no cure is challenging and shaping one’s life around it can feel like you’re sacrificing the life you could have had.

pires has made it a point in her life not to let her disability keep her from doing what she wants, but even so, she has had to make some sacrifices while also experiencing fewer options for things even if she wanted to do them.

“i have had to just kind of accept that there are maybe things that i would have pictured differently in my life or wanted, but maybe they are able to be done with my disability, but not necessarily worth the energy,” she said. “perhaps i’ve just had to make every single life decision in terms of career, travel, relationships, everything around the fact that i am managing my energy and living with a disability … sometimes it’s fine because i am generally satisfied with my life, but sometimes it sucks.”

as for potential options for activities, she won’t know for sure if she would or wouldn’t do them if she didn’t live with a disability. skydiving has come up because her boyfriend and best friend have both done it.

“i don’t want to go skydiving because i worry about my neck support a lot,” she said. “but would i want to go skydiving if it wasn’t a disability-related thing? i don’t know if i’m interested in skydiving.”

solo travel is another that seems like it would be fun, but she can’t be sure if it would be for her.

“i’m also introverted. would i want to solo travel? i’m not sure,” she said.

finding the good in every day

pires has figured out how to live a life that’s fulfilling and right for her with her disability and even on the tough days, she manages to keep a positive attitude toward life with a disability because of what she calls her “daily yay.”

“[it’s] identifying and consciously appreciating something good every day. so, maybe it’s a silver lining to a difficult situation. for example, i formerly worked at a music festival that was really long hours, 15- and 16-hour days on my feet across the weekend. a job i never thought i’d have, but i loved it,” she said. “it was always really tiring and exhausting, and i had a lot of body pain, but i loved it because i would be able to look out from the side of a stage and see the lights and see thousands of people cheering outside and see these really cool dance performances and musical performances going on, and i would be like, ‘wow. i just had 30,000 people dancing and cheering because of something that i worked so hard on.”

other daily yays pires holds onto are trips with friends, where they would go out in the morning while she rested up. she would initially think she was missing out on friendship bonding, but they’d return with a whole map of everything they wanted to see together. they didn’t just go explore without her. they made a point to find out where everything was so they could all go together and be more efficient when they did.

a daily yay could be anything, though, big or small.

“it could be seeing a cute dog in your elevator or finally trying a bakery that you’ve been wanting to try or somebody paid you a compliment or made you laugh really hard or something,” she said. “every day i write in my gratitude journal app, something like, ‘what was your daily yay?’”

while it doesn’t take away the good times, pires said, it helps you get through the bad ones.

“i think that does a lot for your perspective moving forward through difficult situations to realize that, well, there’s also good, but you have to look for it.”

pires hopes that with her speaking and more awareness surrounding invisible disabilities, people will finally realize that “disability can affect you in all different ways.”

“i believe it’s 80 per cent of disabilities that are acquired either in adulthood or through accident or injury. i think if more people thought of disability as not just this thing that happens to other people or that affects other people and thought of accessibility that way. and they realized how likely it is in their lifetime that it will likely happen to them, that people would care a lot more. and i don’t think that you should only care about something because it might affect you. you should care about community and people. but i think for some people, perhaps, that it’s a start to realize that accessibility is not just for other people. it’s also for your future self, your future loved ones,” she said.