Community Views: The Hardest Thing About Living With Sleep Apnea
Last updated: March 2022
To learn more about what you find the most challenging, we asked our Facebook community: “Fill in the blank: The hardest part about sleep apnea is ____.”
More than 200 of you shared, and here is what you had to say.
Being afraid you will stop breathing
Many of you shared that you are afraid of going to sleep and not waking up. Knowing that your body regularly stops breathing because of apnea episodes can make you feel anxious. Instead of giving you a sense of comfort, sleep is a source of dread.
“That I’ll stop breathing while sleeping.”
“That you won’t start back breathing again.”
“Worrying that I might die in my sleep or wake-up a vegetable stuck in my body!”
The many challenges of CPAP
While most of you find it helpful for treating your sleep apnea, the CPAP machine, mask and equipment do not come without their challenges. Whether you are new to using a CPAP or have been using one for years, it can cause a great deal of frustration.
“Wearing the mask!”
“I don’t like my mask sliding all over my face from sweating when it’s hot.”
“I have a hard time with all of the different styles they make. I'm allergic to the silicone the masks are made out of; it messes with my sinuses terribly.”
“The hose and the mask are always in the way.”
“I’m not able to get comfortable when turning on my side.”
“The red marks on my face.”
“The mask coming off in my sleep or the dry mouth.”
“Trying to maintain a good mask seal.”
“Waking with my mouth so dry because I’ve been breathing through my mouth.”
“I have sinus issues, and the mask pushes on my sinuses and causes more pain than if I wasn’t wearing the mask.”
Do you relate to these? What do you think is hardest thing about living with sleep apnea?
Fighting constant fatigue and exhaustion
“Trying to stay awake during the day. I’ve been in trouble at work for ‘zoning out.’”
“Being tired all the time. I couldn’t adapt to the CPAP, so my dentist is making an oral device.”
“Still feeling fatigued even after sleeping for 8 hours or so.”
“Feeling tired all day!”
The fear of power outages
Since most CPAP machines run off of electricity, it is no wonder that many of you fear you will be unable to breathe if the power goes out while you are sleeping. Those of you who live in areas with regular power outages or less reliable service are especially familiar with this concern.
“Worried that I’ll have no therapy if the power goes out and I’ll start snoring again.”
“I’m scared to death when the electricity goes out when I’m wearing my mask. I can’t breathe then and wake up gasping for air.”
“Sleeping when the power goes out.”
Tip from our advocate Tamara: "I live where there are constant power outages. I found a battery backup specifically for my CPAP machine, and it has been great! I also take it with me camping, in case the power goes out there too (we trailer camp). You need to pre-charge the backup, but it hooks up super easily and can power your machine just fine."
Traveling, intimacy, and more
Many of you shared how sleep apnea makes it difficult to navigate other aspects of life. The effects of this diagnosis are far-reaching and may be hard for others to understand. Talking with others who have sleep apnea can help you feel seen.
“Having to wear a mask to go to bed. It also kills the mood if I want to be frisky at bedtime.”
“My insurance company denying my doctor’s request for a machine. According to them, it’s not medically necessary.”
“Dragging the CPAP thru the airport and TSA during travel.”
Thank you to everyone who shared their struggles with sleep apnea. We appreciate you being part of the community.
What themes would you like to see your fellow community members write about?