Good sleep is no accident, not something you are lucky to have or doomed to never enjoy. We spend more than 30 percent of our lifetime asleep, critical time for optimal health and behavior; brain activity restores cellular energy and memories consolidate facilitating learning. Blood pressure, immune function and hormone release get regulated. Inadequate sleep increases risk of diabetes, heart disease, and cancer. Sleep-related fatigue may cost over $150 billion each year.
If sleep is so important, then why do we think that our sleep is what it is, and just 'live with it'?
Is it lack of knowledge, denial, a problem with the medical system or some of each? A patient with sleep apnea (Mark), a physician scientist (Susan), and a sleep researcher (Jessie) reflect on Mark's experiences to highlight that good sleep is no accident, and when achieved, can be a game changer.
Mark's father snored, Mark snored too; Mark's snoring kept his whole family awake. Snoring was not only his problem. His father had fallen asleep at the wheel, and Mark did too. Drowsy driving is estimated to contribute to 6,000 fatal crashes annually. In his fifties Mark began falling asleep at movies, often it meant that he paid ten dollars for a nap. His health worsened from poor sleep, he developed high blood pressure. Research shows that inadequate sleep increases risk for chronic health conditions, even premature death.
Talking to others and finding information online, he dispelled dangerous myths: Snoring is harmful; he could not cheat on sleep; his teenaged son really had needed more sleep; he still needs seven to eight hours of good sleep past sixty.
Mark's PCP focused on his health problems but had not asked Mark about his sleep. He had not thought to discuss sleep until his wife prevailed. She told him that if his snoring could be cured, she would sleep better too. Mark's PCP listened and ordered a sleep study which showed that Mark had severe sleep apnea: he stopped breathing dozens of times an hour and his blood oxygen levels fell dangerously. He found a sleep doctor who prescribed a breathing machine (CPAP) that kept his throat open during sleep, preventing both snoring and breathing pauses. CPAP corrected his breathing so he slept soundly, but only when he used it.
There is no pill for sleep apnea. Using CPAP each night takes personal effort and time to adjust. Mark struggled to find the right mask and often resisted using CPAP, he was still the grumpy old bear in the room. He also saw that he needed to make lifestyle changes, believing that good sleep was important and possible. He learned how to comfortably use his CPAP and became convinced that CPAP was only a partial solution - he also needed to respect his sleep needs. His sleep improved--and so did his wife's.
Not sleeping is a badge of honor for some, a burden for others. Mark, like many, did not realize that he needed more and better sleep. He, his family and his doctors had overlooked the signs because they were not looking. He had symptoms without a context. Happily, he woke up to his condition. Once he began to look for answers, he found them. Mark learned that poor sleep need not be a way of life. Better sleep required recognizing its importance, committing to good sleep habits and treating related issues.
Now ask yourself: Do I snore, stop breathing, have restless sleep, or spend the day with heavy eyelids?
Then decide: I'll talk to my doctor, and get more involved in my own sleep!
Mark wanted to help others, so his sleep doctor connected him to MyApnea.Org, a patient-centered community providing knowledge and support. Here was a way to help raise awareness that good sleep can be achievable, it is not an accident. He joined the more than 5,700 patients, family members, providers, researchers and clinicians collaborating about sleep. He subscribed to a forum on sleep habits, takes surveys, and reads about members' sleep apnea experiences and treatments. Now he votes to rank possible research topics from his perspective and checks that sleep research studies answer questions relevant to patients.
Approaches to health care and medical research are moving to change responding to rapidly rising costs and inadequate outcomes,. New research strategies seek better data, gathered faster, and more efficiently. Clinicians and researchers from different disciplines are working to break down silos and problem-solve together. Patients and caregivers, informed by successes in communities such as HIV and rare diseases, have learned to be organized and assertive, and to work with committed researchers and clinicians.
While sleep is a common cocktail conversation, it is often poorly appreciated and understood by patients and clinicians. By working together, patients, family members, care givers, researchers, and clinicians can find better ways to improve sleep. Thirty percent of Americans get less than six hours of sleep a night and 20% have excessive daytime sleepiness. MyApnea.Org surveys show that most patients had symptoms years before diagnosis. It is time for this to change.
Mark Hanson
Member, Patient Engagement Panel
Sleep Apnea Patient Centered Outcomes Network
Boston, MA
Jessie Bakker, PhD
Instructor of Medicine
Brigham and Women's Hospital
Harvard Medical School
Boston, MA
Susan Redline, M.D., M.P.H.
Peter C Farrell Professor of Sleep Medicine
Harvard Medical School
Brigham and Women's Hospital and Beth Israel Deaconess Medical Center
Boston, MA
addenda:
supplied hyperlinks for facts and health statements - tested same.