(1/3) “When I was 16, I got mono and got really sick. I was really tired all the time and I had it for three months but I never felt like I was getting better. My throat got better, but I was still tired all the time. I would come home from school, and go to bed at 3pm and then wake up for school the next day and not do my homework.
A year later, I was referred to a neurologist and diagnosed with narcolepsy. So, my brain kills off hypocretin which results in waking behaviors intruding into sleepiness and sleeping behaviors intruding into wakefulness. It can lead to falling asleep in inappropriate places at inappropriate times. I'll start to dream before I fall asleep and after I wake up - and these are visual, auditory, tactile hallucinations. Cataplexy is the worst symptom for me which I developed in university. One day, I was laughing and just collapsed. I could see, hear, and feel everything, but I couldn't move. When your brain is in REM sleep, it paralyzes your body to protect you from acting out your dreams. That happens in cataplexy while you're awake, and it's triggered by strong emotions. People called me the fainting goat girl, and they would purposely try to put me into cataplexy. It was a really bad situation that I was living in, because it was a game for some people around me.
I didn't know I could ask for different medications or that I could talk to my doctor and say things weren't working. I didn't know what the options were. I got into a really dark place and at 22, I had a su***de attempt. In the hospital I saw a sleep specialist. It was amazing because he knew exactly what I was talking about, what my struggles were, and he took me under his wing. I stayed in inpatient psych for a couple of months, then did a six-week outpatient program that focused on stress relief, individual therapy, and CBT. I honestly think everybody should do this program because it helped me to see what was at the root of my issues and gave me a toolbox to work through them. It turned out to be a really good experience in the end.”
(2/3) “After I got out, I met this model and the more she said, the more I suspected she had narcolepsy. I asked her if she had talked to her doctor to do a sleep study. She came back and she's like, “You're right. I have narcolepsy”.
At that point, I had so much experience in navigating the health system and what to do with medication and she had a set of skills for web design and business. So together, we started a not-for-profit for narcolepsy awareness. We called it NAPS (Narcolepsy Awareness Programs and Services). It’s a place to start, and keeps people up to date with the latest treatments and research. We also run support groups in Ottawa, Calgary, and New Brunswick, and it’s creating communities online for Canadians with narcolepsy.
It’s really rewarding to get involved in these communities and find people who, like me, were struggling and didn't really know where to go. I wanted to be there for my younger self, so this was kind of the way that I could bridge the gap for other people. There's a lot of things we achieved, like a bursary for students with narcolepsy and a proclamation for narcolepsy Awareness Day in Ottawa. We were also able to complete a case study and bring awareness to a medication called Baclofen for narcolepsy patients that is much more affordable than Xyrem. I see now in regular narcolepsy support groups it's becoming this well-known treatment within the community for narcolepsy, which is super exciting.”
(Photo from NAPS page https://www.facebook.com/narcolepsycanada.ca/about/?ref=page_internal)
(3/3) “A challenge I've noticed is the stigma around, what do I tell my employer? The government is a great employer for people with disabilities but there are more challenges in the private sector and finding employers who are willing to give accommodations. Things have changed now that people are working from home with the pandemic, and I find that accommodations are easier for those types of people. But finding out what we can do about helping people find accommodations or why employers are reluctant to give them is still necessary.
Another challenge is navigating the system in terms of what's covered by insurance, what specialist do I need to go see, how do I approach my doctor and ask for a sleep study, how do I get my doctor to prescribe me an off-label medication? NAPS created a place where people can go for these questions, but it would be great if there was something like that for all people with disabilities in general. That's something I want to look into and want to work on.
I'm very aware that there's such a thing as toxic positivity. Not everyone's disorder is going to respond to medication, it’s not achievable for everyone who has a chronic illness. I've been very lucky that I found medications that work, and I've had employers who are incredibly accommodating because even with medication I still have a lot of sleep inertia. But there is a lot to be said for not giving up, and if you don't have the strength to fight for yourself, find someone who's willing to advocate for you. Even if it's a doctor who was willing to take up the cause or just support you.”
“I've lived here in Ottawa for like, a year and a half. The problem I've had with accessibility is in the basement of this building. I can't get to my car, for example, if I'm in a wheelchair. I can walk fine on some days, just flawlessly. Like you can't really see it. They used to think I was very lazy when I was young, because you can't tell the person - unless of course, I'm in a wheelchair or using a cane. My mother noticed I cried a lot when I was about three. So I started getting sent to specialists. They found out that juvenile arthritis was the closest diagnosis.
Pain is the most significant symptom - it affects me most. But also lately it's been concentration and sleep that has been changing a lot. I need almost twice as much sleep. And my concentration just isn't there. I can't read a book anymore for example. I just don't focus. I grew up more normally, but with a lot more pain… And I've tried almost anything. Like, I'm on the last resort now. The pain is there and you can't really do anything about it but you can definitely educate yourself. Don't give answers like 'my mom had arthritis therefore you must experience it the same' - everyone is different.”
(1/2) “I have a rare illness called von Hippel Lindau disease. It's a mutation in the VHL gene that causes us to struggle with different tumors and cancers. It's really difficult to get treatment and diagnosis because it's so poorly understood.
I'm not visibly physically disabled. But I do have a lot of small things that compound to make life more challenging. Walking is tough, but I am perfectly capable of walking. It just hurts. Tumors in my retinas affect my vision. I'm not blind but they can go super blurry. Most of my accessibility issues stem from chronic pain and because I don't look ill I don't have access to a lot of services that people with mobility challenges do - and if I try to access them, I'm often challenged so I just don't bother.
I once went into a Costco and there was a donor service set up and the guy said to me, “Did you know you can set up to be an organ donor?”, and I said, “Actually I can't, I have cancer”. He says, “Well surely you must have some organs that are unaffected”, and I was like, “Actually, I have cancer in all of my organs except my heart but my heart’s been damaged by side effects from the other tumors”. He's like, “That's ridiculous, you're way too young to be that sick!”.
He judged me based on my age and appearance. So he looked at me and thought you are perfectly healthy, you're just lying about this. I was totally heartbroken because I was listed to be an organ donor before this all happened but I couldn't continue to do so.
My high-in-the-sky dream would be to have things be more accessible. And to have consideration made to anyone with invisible illnesses or other issues that cause accessibility problems. Even just knowing that it's not a burden for us to access those services would go a really long way.”
“My son has the same illness, and he had to have his adrenal glands removed when he was seven. We have very strict instructions with the school that if he gets injured, we need to be called immediately because he needs immediate medication. He is adrenally insufficient, so he could die if he breaks his arm or something, and doesn't get medication immediately.
He's 11 now, and he looks incredibly robust and healthy. He's super physically active, he's really fit. So you would never know that he's got this life-threatening condition, and people just make assumptions all the time. I think that’s my biggest pet peeve; assumptions that anyone knows what we're going through. Nobody in Ottawa has VHL except for us that I know of, so nobody should get to tell us how we're feeling.
He and I are very close. And I think a lot of it is due to the fact that we both have the same illness and nobody knows what we're going through except for each other. He determined that he wanted to do anything he could to help bring awareness, especially for other kids that might be going through what he's going through. He's actually been quite active in a number of different committees that I'm in. Whenever they talk about pediatrics, he wants to get involved and talk to people and talk to other kids. Yeah, he's pretty awesome.” (2/2)
“My name is Kelly. I’m a mom of two and I work in science communications. I’m a runner, and an avid reader.
My experience started 2 years ago when I was diagnosed with amyloidosis — a rare disease that, in my case, affects my vocal cords. Over the course of 2 years I lost my voice almost completely. After 2 surgeries it’s been restored to about 80% of what it was but I’m still self-conscious that my voice is not the one I used to have. From the time my voice started to deteriorate, to getting diagnosed, and through both surgeries, it was challenging to communicate at home, at work, and in general day-to-day life. Once the pandemic started, my voice still wasn’t normal. I felt even more self-conscious in situations knowing that some people wondered if I was sick (or asked). I’m a private person but would explain my condition to make interactions easier.
My workplace was incredibly accommodating, ensuring I was still able to attend and participate in meetings. My colleagues also showed me a lot of support. My biggest struggle was simply my inability to communicate. It’s a cliché, but you really don’t know what you have until you lose it. My voice was something I had always just taken for granted. When it was particularly bad, I was using a whiteboard and typing out notes to communicate and trying to parent my young children by clapping to get their attention. It really affected my confidence going into social and work situations.
I think it would be wonderful if the use of sign language was more common in our society (it’s something I would like to learn myself!). I’ve also been lucky to be able to prioritize my care, and I believe everyone deserves the same. Access to paid sick leave would help people to better manage these aspects of their lives. If I’ve learned anything from this, it’s that you can never take your health for granted.
I think accessibility and inclusion means ensuring there are as few barriers in place as possible to access services and supports. Everyone really is fighting their own battles and if we could all be a bit more compassionate with one another that would also go a long way. I would encourage anyone who is struggling to reach out to friends and family for support."