The Sleep Advocates, Montreal, QC (2026)

02/04/2026

Experiencing a sleep attack in a public place can be risky. Emily shares that we need to be creative in setting policies to accommodate an invisible disability like narcolepsy.

From navigating delayed diagnoses and complicated healthcare systems, Emily has some ideas on how people like her can be better supported.

📚Sleep education for healthcare providers: Her symptoms were not looked at holistically or connected to sleep. It should be recognized that sleep health is critical to all health!

👂Being receptive to patients’ accounts: Doctors would disregard her symptoms, causing her not to trust them.

🩺Early access to sleep specialists: Doctors were linking her facial flushes to lupus or other conditions instead of narcolepsy, which a sleep specialist could have detected. Efforts should be made to increase the number of sleep specialists.

💰Affordability of treatment options: It was eye-opening to hear that she had to pay more than $100 per month upfront, with variable coverage across provinces.

👥Societal awareness around an invisible disability: Emily emphasizes the need to be creative in social situations, especially when the disability is invisible. It's a call for sleep researchers, clinicians and governments to co-create solutions with those living with narcolepsy.

Read Emily’s story here: https://shareyoursleepstory.ca/unconsensual-napping-emilys-experience-with-narcolepsy/

Canadian Sleep Society
The Neuro
Wake Up Narcolepsy

01/28/2026

Call for Volunteers: Share Your Sleep Story

**The Share Your Sleep Story team is currently seeking 2 volunteers to join our growing initiative. If you are interested, please reach out to **madhura.lotlikar@mail.mcgill.ca

Who we are

Share Your Sleep Story aims to connect the data with the voices of the individuals who face the challenges of sleep, due to their profession, life-altering events, social and environmental circumstances or sleep disorders.

We are a team of people from diverse fields and backgrounds, unified by our mission to advocate for those facing sleep challenges, raise awareness, and make sleep health a priority on policymakers' agendas.

If you would like to learn more and read past stories, please visit our website: https://shareyoursleepstory.ca/

We are supported by McGill University, the Neuro, the Canadian Sleep Society, Wake Up Narcolepsy and Réseau Sommeil.

Volunteer role descriptions

Translator (EN → FR)

Role: Translate published and new English stories into French

Goal: We are striving to amplify the impact of the sleep stories by reaching a wider Canadian audience

Qualifications: Must be fully bilingual in English and French. Prior work in translation is an asset, but not needed.

Social media marketing specialist

Role: Collaborate with our social media specialist to help plan social media advertising on platforms such as LinkedIn, Facebook, and Instagram. You will also track Ad performance metrics and adapt strategies as needed.

Rationale: We aim to expand our visibility, diversify the voices we feature, and grow our reach

Qualifications: Have prior experience on all mentioned social media platforms for advertising, or are willing to learn if you lack experience on one of the platforms. You will have independence in creative ideas for increasing engagement and reach for this initiative.

**If you are interested, please reach out to **madhura.lotlikar@mail.mcgill.ca**

01/23/2026

People living with narcolepsy are at increased risk of developing comorbid conditions, including depression and substance use disorders. Conversely, sleep disorders are more prevalent among individuals with substance use disorders.

Emily is one of those who, along with narcolepsy, also suffered from depression, and at times, this led her to ruminate about su***de. Emily said, “I can’t describe it better than just feeling like a weight that was constantly crushing my body down, and I was just trying to fight to stay above water.”

Her story highlights the importance of evaluating co-occurring sleep, psychiatric, and substance use disorders, and of adopting a holistic approach to assessment and treatment of these conditions.

Read Emily’s full story here: https://shareyoursleepstory.ca/unconsensual-napping-emilys-experience-with-narcolepsy/

Canadian Sleep Society
The Neuro
Wake Up Narcolepsy

01/14/2026

How would you feel when sleep, the very thing that is meant to relax you, exhausts you? When you are uncertain if you can even finish grocery shopping because the weight of exhaustion is heavier than the bags you carry, and every waking day feels like “walking through mud or slush…trying to get the tasks done.”

This month, we share Emily’s story of living with narcolepsy type 2 while navigating depression, substance abuse and misdiagnoses as a teen, in two different healthcare systems of the U.S. and Canada.

Read Emily’s story here: https://shareyoursleepstory.ca/unconsensual-napping-emilys-experience-with-narcolepsy/

Canadian Sleep Society
The Neuro

12/26/2025

As a nurse herself, Rebecca knows firsthand how little is taught about sleep in an academic setting.

While sharing her own experience of dealing with medical meandering, Rebecca shares the much-needed changes to support someone dealing with narcolepsy.

👥 1. Don’t dismiss teenagers: Teenagers are commonly dismissed when they bring up sleep issues. It took 3 visits to the doctor over her teenage years before she was even referred to a sleep study at age 18.

🩺 2. Increase doctors’ education: Even when she finally received the correct diagnosis, Rebecca’s doctor didn’t know the condition and the available treatment options very well.

🧑‍💼 3. Awareness & workplace adaptation: Failure to accommodate hurts everyone: employers deprive themselves of qualified employees, and people with narcolepsy may find themselves forced to fight for disability benefits after being shunned by too many employers because of their condition.

Read Rebecca’s story here: https://css-scs.ca/share-your-sleep-story/rebeccas-story/

If you have a sleep story to share, reach out to the.sleep.advocates.zzz@gmail.com

The Neuro
McGill University
Canadian Sleep Society

12/19/2025

Many people with sleep disorders also have comorbidities, and one condition can worsen the other. They affect people with lives to live, obligations to fulfill.

Rebecca shares her experience dealing with narcolepsy, nighttime insomnia, sleep apnea and depression.

It highlights the need to investigate whether treating sleep disorders can ameliorate accompanying conditions.

Sleep problems don’t exist in a vacuum, and we need to talk about them. If you have a sleep story to share, reach out to the.sleep.advocates.zzz@gmail.com

Read Rebecca’s story here: https://css-scs.ca/share-your-sleep-story/

Canadian Sleep Society
The Neuro
McGill University

12/12/2025

“It’s a hard diagnosis to deal with. As much as you suspect it, you know it’s chronic, and you hope that it’s something else because you don’t want to have to deal with this forever,” said Rebecca, who lives with narcolepsy.

Rebecca, who also suffers fromsleep apnea and depression, shares the journey of her diagnoses, being dismissed by doctors, getting workplace accommodations and finding community.

Two conditions that can, on their own, impact sleep and energy. When combined with narcolepsy, it isn’t always easy to know where one ends and the other begins.

Sleep problems don’t exist in a vacuum, and we need to talk about them. If you have a sleep story to share, reach out to the.sleep.advocates.zzz@gmail.com

Read Rebecca’s story here: https://css-scs.ca/share-your-sleep-story/rebeccas-story/

Canadian Sleep Society
The Neuro
McGill University

12/01/2025

“It always comes back. I have no reason to believe that it will never happen again. It has happened my whole life,” said Brenda, who struggles with sleep paralysis.

What if we could create a world where people living with a sleep disorder finally have a reason to believe, “This won’t come back.”

Brenda has struggled with sleep paralysis for as long as she can remember. She knows firsthand the experience of living with a terrifying condition and has found ways that help her get it under control.

However, she also shares what she wishes could change about the way we talk about and handle sleep paralysis.

📚Beat stigma through normalization and education - lack of representation prevents individuals from speaking openly about their condition or finding words to explain the condition. How can we manage what we can’t describe?

🔬Increase research - develop effective treatments beyond prescribing the sleep hygiene techniques and identify the underlying cause.

Read Brenda’s sleep story: https://css-scs.ca/share-your-sleep-story/brendas-story/

Canadian Sleep Society
The Neuro

11/24/2025

Throughout our conversation, Brenda often said, “It’s really hard to explain” or “I don’t have words”. Lack of vocabulary can stem from a lack of representation and understanding of the experience.

Across cultures, sleep paralysis has been associated with many supernatural beliefs, such as nocturnal alien abductions and demonic attacks or paranormal connections, which in turn might hold back someone coming out and seeking help or identifying other underlying conditions.

Read Brenda’s sleep story, filled with blurry hallucinations, paralysis, and a desperate fight to reclaim control during moments that feel like eternity.

The story: https://css-scs.ca/share-your-sleep-story/brendas-story/

Canadian Sleep Society
The Neuro

11/14/2025

There is growing evidence on the coexistence of sleep and wakefulness, that our brains can possess hybrid states rather than being globally asleep or awake. These local brain islands can be beneficial in some cases, but at other times can be a cause of terrifying emotional distress, like for Brenda.

Brenda has had sleep paralysis since her childhood, an in-between state, where Brenda is hallucinating, but is physically stuck.

Read Brenda’s sleep story, filled with blurry hallucinations, paralysis, and a desperate fight to reclaim control during moments that feel like eternity.

The story: https://css-scs.ca/share-your-sleep-story/brendas-story/

Canadian Sleep Society
The Neuro
Fondation Sommeil

11/03/2025

🚨📰 Newsletter Alert!

The Sleep Advocates is excited to announce the launch of our monthly newsletter to nurture our community!

We want to send you new stories and our updates right to your inbox so that you never miss reading an important story!

Subscribe to the newsletter to read the newest monthly story, hear about our initiative’s updates and meet a member of our team on the 14th of every month.

Click the link: https://the-sleep-advocates.kit.com/00d8cb000e
Or scan the QR code

Subscribe and share!

10/27/2025

After years of struggling with narcolepsy and ultimately becoming a physician herself, Sarah understands the importance of lived experience and empathy between patient and doctor.

We asked Sarah what needs to be changed!

👶Diagnosing pediatric sleep disorders - Perhaps, a consistently sleepy kid is not just “lazy”.

👊 Beat stigma and stereotypes - Mischaracterizing narcolepsy and using it as a source of ridicule is sadly popular in media and movies even in 2025! This is hurtful and harmful for people living with sleep issues.

📚Education for doctors and the public - During medical school, Sarah designed a lecture that outlined an approach to complaints of sleepiness or fatigue. Lack of awareness amongst physicians and health care professionals is a systemic issue which needs fixing, but listening to patients’ persistent complaints with empathy and giving importance to lived experience is imperative.

💸Cost coverage - Narcolepsy medications are expensive and can add up quickly, especially for students!

Read Sarah’s full sleep story here: https://css-scs.ca/share-your-sleep-story/sarahs-story/

Narcolepsy impacts approximately 3 million people around the world. Let’s talk about it, and if you have a sleep story to share, reach out to the.sleep.advocates.zzz@gmail.com

Wake Up Narcolepsy
Canadian Sleep Society
McGill University
The Neuro

The Sleep Advocates

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