We’re looking forward to introducing you to Emma Cooksey. Check out our conversation below.
Hi Emma, thank you so much for taking time out of your busy day to share your story, experiences and insights with our readers. Let’s jump right in with an interesting one: What is something outside of work that is bringing you joy lately?
I just rediscovered a love of painting. I got a paint-by-numbers kit as a present and was surprised by how much joy it brought me. There’s no stress, just a creative outlet where I get to watch a beautiful painting come to life. I started with painting national parks and vintage travel posters, and now I’m working on different species of birds.
Can you briefly introduce yourself and share what makes you or your brand unique?
I’m an award-winning patient advocate living with obstructive sleep apnea and working for the non-profit patient advocacy group, Project Sleep. I went undiagnosed with obstructive sleep apnea as a young woman. Every visit to the doctor, I was told that I didn’t look like someone with sleep apnea, even though I had all the symptoms. At the age of 30, as a new mom, I fell asleep at the wheel and narrowly avoided a serious collision. That was the impetus I needed to push for the sleep study that led to my diagnosis with obstructive sleep apnea. My own journey showed me that too many people who didn’t fit the stereotype of being an older, overweight man were going undiagnosed with obstructive sleep apnea. I recently had the opportunity to launch an awareness campaign called Sleep Apnea: Let’s Face It! to feature real faces and stories of people living with this condition. My goals are to shatter stereotypes that still exist around who can have sleep apnea and raise public awareness to get more people the testing and treatment they need.
Thanks for sharing that. Would love to go back in time and hear about how your past might have impacted who you are today. What did you believe about yourself as a child that you no longer believe?
I grew up in Scotland, where I was always taught that doctors know best. If I were taken to the doctor and they said there was nothing wrong and no tests were necessary, I would accept my parents’ view that the doctor’s opinion was fact. It had never occurred to me until later in life that I could advocate for myself as a patient. My work as a patient advocate with Project Sleep has taught me a great deal about the importance of being your own advocate in healthcare settings. Primary care physicians don’t receive adequate training in sleep and sleep disorders. That can lead to people going years without a diagnosis, even though they have symptoms of sleep disorders.
What fear has held you back the most in your life?
I got my diagnosis with obstructive sleep apnea in 2007. At the time, I knew no one in my life with a sleep disorder and felt isolated and alone. The few times I mentioned my diagnosis, I heard neighbors joke that “sleep apnea is something big old truck drivers have!” or that it must be so funny wearing a Darth Vader mask to sleep. I was fearful to speak openly about this diagnosis because it felt unfeminine and a joke to other people. For more than 10 years, I struggled with my diagnosis and CPAP therapy. I assumed that everyone else in my situation was doing well and had no problems. It was only when I overcame the fear of what other people thought and publicly shared my story that I realized here was a whole community of people with similar experiences to mine.
Alright, so if you are open to it, let’s explore some philosophical questions that touch on your values and worldview. Is the public version of you the real you?
Yes. There is a wonderful freedom to building your career around your true-life story. Sharing about my health conditions publicly, including mental health challenges like anxiety and depression, has empowered me. In 2020, I started a podcast called “Sleep Apnea Stories,” where I not only interviewed other people living with sleep apnea and experts who treated them, but also shared my own health journey with listeners. My accompanying Instagram account, @sleepapneastories, also allowed me to share my life openly and connect deeply with my followers over our shared experiences with this chronic health condition. Project Sleep, the non-profit I now work for building education and awareness programs, is dedicated to sharing real stories from people living with sleep disorders. I feel fortunate to have a role where I am very much encouraged to bring my true self to work every day.
Okay, we’ve made it essentially to the end. One last question before you go. Are you tap dancing to work? Have you been that level of excited at any point in your career? If so, please tell us about those days.
Yes! Right now, I am more energized than at any other point in my career. I am pouring myself into two programs at Project Sleep: Sleep Apnea Squad and Sleep Apnea: Let’s Face It! Over the four years of hosting my podcast, “Sleep Apnea Stories,” and running my Instagram page, @sleepapneastories, I came across the same problems again and again. The first was that the public, and even healthcare professionals, were not educated enough about sleep apnea, from signs and symptoms to the range of treatment options available. The second issue I saw was the need to shatter stereotypes about who could have sleep apnea. With the Sleep Apnea Squad program, I am creating free resources to provide accurate information about sleep apnea in formats people can easily access. From panel discussions on Project Sleep’s YouTube channel to podcasts, PDF toolkits, and social media content, our goal is to meet people where they are with the information they need. Sleep Apnea: Let’s Face It! is a public awareness campaign that encourages members of the sleep apnea community to publicly share about their experiences using the hashtag #SleepApneaLetsFaceIt. Seeing the broad range of people represented in this campaign motivates me to keep pushing for the changes we need to better support people living with sleep apnea.
Contact Info:
- Website: https://project-sleep.com/sleep-apnea-squad/
- Instagram: https://www.instagram.com/project_sleep/
- Linkedin: https://linkedin.com/in/emma-cooksey-sleep-apnea
- Youtube: https://www.youtube.com/c/Project-sleep
Image Credits
The photo of me with the glasses on: Amalie Orrange
The campaign photos with white backgrounds: Amalie Orrange
No need to credit the others.
