Q&A with Emma Cooksey of Sleep Apnea Stories

We caught up with Emma recently via Zoom. 

This interview has been edited for length and clarity.

Complete Sleep: When did you first start experiencing sleep apnea symptoms, and how long do you think you lived with sleep apnea before getting diagnosed?

Emma Cooksey: I didn’t realize something was actually wrong until my early 20s, when I worked in a corporate environment for the first time. The hours were long and I was struggling just to stay awake the whole day. 

I'm pretty sure that in retrospect I had sleep apnea starting in my late teens, however. I snored, I woke up in the night, had terrible morning headaches, and felt sleepy throughout the day. Of course, I didn’t know that these were symptoms of sleep apnea back then. When you're in college, everybody's tired, right? You’re working, studying, going out, having a social life… there are so many reasons to be tired that it can be hard to identify an actual problem. I didn’t end up getting diagnosed until ten years later. 

CS: I know the experience that prompted you to get tested for sleep apnea was fairly traumatic. Would you feel comfortable talking about it?

EC: We can talk about it. I used to have nightmares, but it doesn’t feel like trauma anymore — I’ve done my therapy. 

When I was a new mother, I knew that I wouldn’t be getting any sleep for a while. But when my baby started sleeping through the night, I figured I would finally catch up on some rest. But even though I was able to sleep again, I was still having the same problems as I’d had before. So I booked an appointment with my primary care physician. I’d gone to her for the same issue when I was pregnant, but she dismissed it as a typical pregnancy side effect.

So I went back to her and said, “I know you're going to say that I'm tired because I have a newborn, but that's not what this is. I've been feeling this way for ten years, and it's getting worse. My baby's sleeping, I'm having the opportunity to sleep, and I still feel terrible. My morning headaches are bad. I’m tired throughout the day. We should really look at my sleep.”

Now, in her defense, primary care physicians aren't really trained in sleep. They don't have a lot of experience, and they often don't know a lot about it. She told me that the main sleep disorder she tested people for was sleep apnea, but she claimed that it only affects older overweight men, and since I was a young woman, I didn’t need to test for it. So I left her office pretty frustrated. 

Three weeks later, I was in the car driving back home with my baby strapped into her car seat in the back. We were driving across Buckman Bridge, in Jacksonville, Florida, near where we live. It's a really long bridge with no opportunity to stop. As soon as I got on that bridge, I felt this overwhelming feeling of sleepiness come over me.

I started blowing the fan on my face to help me stay awake, and I decided to focus on the huge white truck in front of me. It was far enough away that I couldn’t read the license plate, which felt like a safe distance. Then it looked kind of blurry. A split second later, the license plate was rushing towards me. I slammed on my brakes, and by some miracle, we avoided a collision by a couple of inches. It was terrifying.

When I came home, I had tears rolling down my face and my adrenaline was pumping. I gave the baby to my husband and said, “I have to go and call that doctor back and tell her I just fell asleep at the wheel.”

At that point, I hadn't ever heard of a sleep study. I didn't really know what to do, I just knew that there was something not right and I needed help, you know? I’d been to so many doctors at that point — I always knew there was something wrong, but nobody would help me.

CS: I’m sorry you had that experience, and am so glad that things worked out the way they did. I think it’s very gracious of you to excuse the doctor for not testing you right away. It’s kind of mind-boggling how underdiagnosed women are as a result of this misconception that women can’t have sleep apnea. It’s so prevalent, even in the medical community. 

EC: I recently gave a presentation about this. I found that studies show 80% of people who have sleep apnea don’t know they have it and are undiagnosed. That's a massive problem. Now consider that 93% of women with sleep apnea are undiagnosed and 95% of Black Americans are undiagnosed. It’s a health crisis, and we’re just not doing anything about it.

CS: I mean, you are — you’re getting the message out there! Speaking of, you started your podcast, Sleep Apnea Stories, in 2020. What inspired you to create it, and how long had you been diagnosed with sleep apnea before starting it? 

EC: I was diagnosed in 2008, so I’d had it for a good 12 years before starting the podcast. I was using CPAP every night, but I felt shame around the diagnosis. I didn't know anyone with sleep apnea, and it bothered me that I felt alone and isolated in this.

I really wanted more community with other sleep apnea patients, especially women, but didn’t know what to do about it. Then the pandemic came. My kids were sent home and I’d been sent home from work, so I started looking around for a project. Then I happened to listen to a podcast about how anyone can start a podcast. 

I thought about what I would really want to listen to, what I’d been missing in my life, what I hadn’t been able to find. I’d listened to some good podcasts on sleep apnea, but they tended to feature doctors talking in a formal way about diagnosis — they weren’t community-oriented. So I came up with this idea for a podcast called Sleep Apnea Stories, where people could share their stories about living with sleep apnea.

So that’s how it started. I wanted to create this platform for people with sleep apnea, and I wanted to create a community around it. Now I’m in touch with so many people who share this experience. Listeners reach out all the time and let me know how they're doing, and I love that.

When I first started my podcast, I didn't really know what to expect. I wasn't sure if my experience would resonate with other people, but it turns out that most people I interview are on the same page. For instance, when I was first diagnosed, I felt a lot of grief around the diagnosis. I felt relief that I finally had a diagnosis, but also grief because I’d wasted all this time. 

CS: You've spoken to so many people who have sleep apnea. What's another commonality you've noticed in their journeys?

EC: The mental health component. When I first started the podcast, it was quite a big deal for me to admit that I had anxiety and depression, which had always run along with my sleep apnea. I thought I was going to be an outlier in this regard. But I’ve interviewed 70 or 80 sleep apnea patients at this point, and only two of them didn’t experience either anxiety or depression. One of those people was very young and got a diagnosis and treatment straight away, which I think really helped. The other just didn’t seem emotionally impacted. 

But every single other person I've talked to who has sleep apnea also has had anxiety, depression, or both. I’ve spoken with multiple people who received a mental health diagnosis before they finally got diagnosed with sleep apnea, too. Instead of doing a sleep study, their doctor referred them to a psychiatrist initially — then they had to go down this whole other route before getting treatment.

CS: What’s a piece of advice you’d want to pass on to someone who thinks they might have sleep apnea but hasn’t been diagnosed yet?

EC: If you're sleeping a good number of hours a night but you consistently wake up feeling like you’re not well-rested, don't wait too long before exploring that. There are a lot of diagnosable sleep disorders and there are treatment options available.

I think sometimes people get a little bit lost in the concept of “sleep hygiene.” A lot of sleep hygiene advice is really useful, of course, but I also think it can be misleading for people who have a sleep disorder. If you try out having good sleep hygiene — sleeping in a cool, dark room, etc. — but you still feel really tired when you wake up after a full night’s sleep, then I’d urge you to get a sleep test. I’d also encourage people to find a treatment that works for them, even if it’s a little outside the box. For instance, right now I’m combining therapies by using both a CPAP and an oral appliance.

CS: For tons of people, the CPAP works brilliantly, right? It’s amazing. But for many others who are resistant to using the CPAP or just have a lifestyle that doesn’t align with a CPAP, it seems like the oral appliance would be a better fit. But doctors seem to always just go straight to CPAP. What do you think?

EC: So clearly, a person who's been prescribed the CPAP but isn’t using it is getting absolutely zero treatment, right? I understand where the doctors are coming from — they're looking at clinical studies, which show that your sleep apnea might be more controlled with a CPAP. I get that, but you have to live in the real world and look at the actual patient in front of you, not an idealized version.

I've gone through a big change on this issue. When I first started this podcast three years ago, I remember arguing with an Italian dentist about a patient of his who wouldn't use CPAP. This patient’s apnea-hypopnea index had started at like 70. By using an oral appliance, the dentist had managed to bring it down to 15. I was outraged. I remember saying, “If his AHI isn’t under five, then you can't say that his sleep apnea is properly treated!” In retrospect, I kind of want to punch me.

CS: No, I hear you — it technically wasn’t the perfect treatment. But we don’t want to let the perfect be the enemy of the good, right?

EC: Exactly. And the dentist was saying, “Yeah, this patient won’t use the CPAP, but he is using the oral appliance, so… this is better. He’s getting treatment.” And these days I recognize that that's really true. If you can take someone from very severe sleep apnea to much milder sleep apnea, the effect on their nervous system and cardiovascular system is going to be vastly better. 

CS: At Complete Sleep, we’re working to simplify and streamline the process for getting tested and treated for sleep apnea, which has historically been a pretty complex process for a lot of people. Once you convinced your doctor to finally let you do a sleep study, what was your journey getting diagnosed like? Were there any hurdles?

EC: So, first, I'm really glad that Complete Sleep is addressing this problem. One of the big hurdles across the board is that there just aren’t enough sleep specialists. Plus, so many people have to wait months for in-lab testing.

For me, the whole process was really difficult and disorganized. Initially, I was referred by my primary care physician for a sleep study. My insurance company was testing something that I’d later find out was highly unusual: they did a full polysomnogram in my home. They sent a sleep tech to my house who wired me up with electrodes, then set up a laptop beside my bed with a webcam. Then a different sleep tech watched me sleep on the webcam and scored the study remotely.

After that, I went to a sleep specialist who gave me the diagnosis, but the whole experience felt quite disjointed. I didn’t have a relationship with that doctor; he just kind of assigned me a diagnosis, then sent me off to a durable medical equipment company where they looked at my paperwork, gave me a CPAP in a plastic bag with a mask that didn't fit my face at all, and sent me home.

So I didn't like my experience. When I had problems with my CPAP, I didn't know who to call. Everything felt fragmented. A lot of people I’ve interviewed have struggled with this process, too — they wait too long to get tested, then a specialist sends them for a sleep study, then sometimes they'll go back to the sleep specialist, then they get sent to a different company to get CPAP. And nobody knows who to call or ask for help if they have a problem.

CS: I’ve heard that a lot — that getting diagnosed and treated can feel chaotic and overwhelming. That’s something we’re trying to address by creating a really cohesive process and assigning each of our patients a Sleep Team who are all in communication with each other. What would you want to see us do — what advice can we take from you to better serve our patients?

EC: The term “cohesive” doesn’t normally describe the way this process typically goes, so I’m glad that that’s your goal. Namely, I would just make the whole journey way less disjointed and a lot more patient-friendly and patient-centered. Rather than making the patient piece together their own journey, it would be great if they had a team coordinating care for them like you’re talking about. That would be a huge improvement.