Getting diagnosed with severe obstructive sleep apnea (OSA) felt like a true breath of fresh air, a much-needed one at that—but only for a slight moment.
After finding out about the diagnosis, my intent was to enter the next era of treatment with enthusiasm and relief, but the path wasn’t as clear or as reaffirming as I hoped it would be. It was difficult, filled with doubt, self-consciousness, and riddled with much-needed mental work.
I wish I had been better prepared to face the reality of OSA treatment using continuous positive airway pressure (CPAP).
Although I had been experiencing symptoms of sleepiness, exhaustion, headaches, sore throats, and loud snoring since I was 15, I was 25 when I finally received a proper diagnosis. I had waited a long time to be able to feel like I wasn’t choosing to be lazy, undisciplined, or making bad choices in sleep. Fighting that mindset and perception was already challenging enough as an undocumented, immigrant, gay, young man with immense pressure to push each day to fit expectations and seek success.
Being in my mid-20s, there was a certain feeling of embarrassment that came with sharing my OSA diagnosis with others. Most media had painted OSA as something that happens to older, overweight men. I immediately formed some of that stigma and shame within myself without anyone to keep me in check.
The moment I first set up my CPAP machine on my nightstand, I trekked from eagerness to immediate retreat like a sad puppy. As a single man in my 20s, I should have been electrified staying out late clubbing, dating, and having fun. Instead, I started to dread the thought of conversations with anyone about the machine or about why I couldn’t deviate from my sleep hygiene, stay over someone else’s place, or have a boy stay over late.
I catastrophized what it meant to have someone spend the night, even if it was a close friend visiting for the weekend. I remember emotionally bracing myself anytime I’d bring someone over. Each time I’d gnaw at my self-esteem as I tried to make others comfortable with my condition, as if it were an inconvenience for them.
This slowly ate away at my confidence and my ability to find strength within myself during a time when getting used to the machine was testing me each night. Using the machine came with a huge learning curve: Mask tightness, sleeping position, drooling, painful gas from air going down the wrong pipe, waking up in the middle of the night to adjust or take the mask off altogether out of frustration.
I was presented with the imagery of what could happen if I didn’t receive OSA treatment, but I never could have guessed all the side effects of using the machine for treatment. Altogether, I would 100% choose the machine over no treatment, but I got to a very dark place when I was on my own facing all those mental hurdles. I wish I had been more prepared to accept better sleep.
I did get lucky on one escapade my friend dragged me out to. In 2017, when I was 26, I met Frankie, my partner. He saw my nighttime routine at its worst and to this day continues to support me in managing my sleep health. It’s constant work, and I am so glad I have him to lean on.
While we’re on the topic of partners, the level of open dialogue that is necessary with a bedroom mate is also something I wish I had more preparation for. Each couple is different, but patience is necessary from both sides to truly coexist as one is using a CPAP machine. Frankie and I have an understanding that on certain occasions, we must sleep separately without letting guilt fester in either of us.
I started finding solace in not just my partner, family, and friends, but also finding a network of people passionate about community. Emma Cooksey, from Sleep Apnea Stories Podcast and Project Sleep, came into my life at a very pivotal moment in 2020. Up until then, I was steering this ship without a manual through rough waters—and visibility was getting low.
Through Emma, I was connected to a network of other advocates who share their stories related to their sleep disorders like narcolepsy and sleep apnea. Hearing their stories, their points of view, their struggles, while sounding cliché, helped make me feel less isolated in the intense feelings of inadequacy. It turns out that stigma was never truly real. It all stemmed from my insecurities and self-doubt.
I didn’t know at the time, but I needed more guidance. I needed some kind of warning or advice on how to navigate for the next couple of years after getting my CPAP machine. I was instructed on how to take care of the machine—cleaning it, packing it for travel, ordering new parts—yet I deeply needed follow-up conversations not related to my breathing but my mental health.
So many things I wish I had known. I wish I had known what questions to ask. Some things about life are uncertain and we can’t know all the details. Sometimes, though, it makes a difference in how we see ourselves and the conditions we’re adjusting to. I would have liked better bracing for the journey ahead: a special message of encouragement, a positive gesture of confidence, or an agreement of terms.
It took me a while, but I’m at peace with my treatment. Today at 35, I’m working on myself each day and actively attempt to not to mix my OSA into the soup of emotions life already brings. To good sleep and breathing well!
