In this month’s community interview we talk with invisible disability speaker and advocate Lauren.

Hello Lauren! It is awesome to talk with you today. Could you please tell us a little about yourself?

I live in Mississauga, Ontario. I live alone, but my immediate family are my parents and my brother who’s 3 years younger 🙂

I like to travel and try new restaurants with my boyfriend, hang out with friends in coffee shops, sing along to musical theatre songs, and dance. I also love watching dating reality shows haha.

I’m an invisible disability speaker on resilience and belonging. I speak to corporations, schools, and other organizations about my journey of going from never talking about the rare neuromuscular disability I was born with, to becoming a disability advocate, and how they can take the same steps I did to start embracing the parts of themselves they’re avoiding as well. I’m also an Ambassador for the Rick Hansen Foundation School Program, where I speak to K-12 students about disability and inclusion.

Do you have a diagnosis for your symptoms?

I do! I was born with Central Core Disease (CCD), a rare neuromuscular disorder where some of the mitochondria in my muscle cells are missing. You might have seen the meme, or remember from science class, that the mitochondria is the powerhouse of the cell; converting food into energy and energy into strength. Since some of my mitochondria are missing, I have about 33% of the physical strength of the average person, so things like walking up a flight of stairs, getting up from sitting on the ground, opening a heavy door, or carrying a lot of things are harder for me than the average person.

Does having a diagnosis help you? 

Having a diagnosis really helped me, because I finally had something to Google to find out why my body was the way it was, and to look for other people who have the same diagnosis. Even though I was born with my disability, I wasn’t diagnosed until I was 21, and I didn’t hear the 33% strength confirmation until I was 26.

Not having a diagnosis for 20+ years was part of why I never liked to talk about my disability – I didn’t have the language for it or know what it was, to know how to or be able to talk about it. It still took me about 10 years from getting the diagnosis to speak about it publicly and be more open, but having a diagnosis definitely helped. When I was 26, I found a Facebook group of over 1,200 people who either also have CCD, or have kids who do, and it was really exciting to finally find a community of people who understand what it’s like to live my disability.

How long did it take for you to get a diagnosis?

I was misdiagnosed at 12 years old with a mitochondrial disorder, then finally diagnosed at 21 with Central Core Disease. 

When did you first realize that you had a disability and how has your journey been since then?

I was born with my disability. When I was born I didn’t cry, couldn’t suck to be fed, and couldn’t move my limbs. I spent 2 months in neonatal intensive care and went into cardiac arrest, luckily while a doctor was right beside my incubator to save me. When I was 10 days old, I had my first muscle biopsy, but it was inconclusive.

I’m not actually sure when I first realized I had a disability – I always knew I wasn’t as strong as other kids and couldn’t do things like they could; like I couldn’t run, or jump very high, and I’d get tired more easily. But because I was undiagnosed for so long, I’m not sure when I actually connected it to having a disability, though it was likely sometime in elementary school.

When I was young, doctors didn’t think I’d live, and a lot of people thought I wouldn’t be able to go to a regular school or graduate university or work a job. I’m glad to have proved them wrong and done all of those things, it was just harder for me than the average person because I have less strength and stamina.

How has your experiences of the world changed since your symptoms started?

My symptoms have mostly been the same throughout my life – my muscles have always been weaker, and I’ve struggled with physical strength and stamina. I also need to fit in rest days/periods when I’ve been particularly busy. 

Something that did change my experience of the world, even though my symptoms have been mostly stable, was finding out the 33% strength assessment of my muscles at 26. Up until then, I never really had a sense of how my strength compared to anyone else, so hearing the 33% measurement felt pretty dramatic. It was kind of a shock to hear that and realize I lived my whole life on 33% strength of the average person, and I worried about what kind of life you can have like that.

But then I realized, I live 100% of my life, and I’m happy with many of the things I’ve accomplished and the life I’ve built. I think it also gives me a greater sense of empathy, in that I realized I’ll never know what it’s like to live with 100% strength, so I don’t necessarily expect people to know what my life is like with 33% strength either. It makes me empathetic to the struggles that other people face, that you wouldn’t know from just looking at them.

Which of your symptoms do you find the most debilitating and why?

Getting tired more easily and having to rest more often can be frustrating – there’s a meme I see sometimes that’s like “I’m kind of like if a person who wanted to do a lot of things was trapped in the body of someone who needed to lie down a lot” and I felt that lol. Recently I went camping with my boyfriend and some friends at an arts festival that involved a lot of walking on uneven terrain in a field, and eventually my legs got so tired from all the walking that I wasn’t able to get myself up from sitting down anymore, and had to have my boyfriend or best friend lift me upright. It can be upsetting to face the things I’m not physically able to do like that, but I’m lucky to have great supports in the people around me.

What has been the most helpful for you as you have gone through this journey?

I live by a concept I created called the daily yay – which is part gratitude practice, and part mindset/perspective shift. Basically, it’s identifying and consciously appreciating something good every day. Maybe I saw a cute dog in my elevator, or tried a bakery I’ve been meaning to, or my boyfriend said something funny, or I hung out with friends; but I find putting energy towards recognizing something good that day keeps me going. Now as part of my invisible disability speaking, I’m spreading the daily yay as a means of building resilience through joy – whether you have a disability or not, positivity is a muscle that you have to work out regularly, and the daily yay can be a great start.

Thank you Lauren!

You can follow along with Lauren on Instagram @laurensaysyay and at her website: https://www.laurensaysyay.com