My “Lifestyle” Misdiagnosis

For my entire 20s, my obstructive sleep apnea (OSA) went undiagnosed. This was despite my consistent daytime fatigue. I described my low energy to doctors, telling them it was despite sleeping an average of 10 hours. Later, a "lifestyle" misdiagnosis came before learning about sleep apnea.

Common symptoms

I'd also explain that I woke up feeling like I had not slept at all. There were probably only 1 to 2 days a month where I felt an adequate amount of energy to get through my day. Before I understood the medical terminology associated with sleep apnea, I would also describe feeling like I “couldn’t think clearly.” Now I know that this is a common symptom of sleep apnea known as brain fog.
I would bring up my low energy at nearly every visit that I had with my PCP and my endocrinologist. (My endocrinologist monitors my thyroid disorder which is well-maintained). Occasionally, if I felt especially frustrated with my low energy, I would bring it up to my gynecologist.

It’s not that my doctors wouldn’t try to find the root cause; instead, after lab work ruled out imbalances and deficiencies, the investigation into my complaints would not continue. Everything was within normal limits. There did not seem to be a medical cause for my complaints.

Lifestyle changes

I don’t have the traditional story of a trail of misdiagnoses. Instead, my symptoms were frequently blamed on my “lifestyle.” I was “too busy”, did “too much outside of work”, and needed a more consistent routine. During my years of living with undiagnosed sleep apnea, I had doctor visits where I would not bring up my energy at all. At those times I was frustrated from complaining about the same thing repeatedly. I didn’t want to deal with the “lifestyle” discussion and that was what I had learned to expect.

But here’s the thing: without any answers or treatment for my low energy, I had no choice but to live my life. I went to college and graduate school, formed important personal relationships, got married, and held multiple jobs. Somehow doing all of those things became the justification for my low energy, instead of the things that I was accomplishing in spite of it.

Lifestyle misdiagnosis before sleep apnea?

The “lifestyle” explanation never made any sense to me. Over the years, I trained myself to make it through my basic responsibilities without falling asleep. There were so many days when I would take a nap right when I was home from work. During my 20s there were times when I was incredibly busy with inconsistent sleep routines.

During those years I worked a variety of overnight jobs while going to graduate school. I also had years in my adult life where I worked more consistent 9 to 5 jobs. Some of these jobs were from home meaning that I did not have a commute to blame for draining my energy. Throughout every phase of my adult life, 1 thing was consistent: I never felt rested.

How could it be my “lifestyle” if I maintained several different lifestyles over those years and my energy never improved?

Continued low energy

My lack of diagnosis and correlating low energy spanned into my early-30s. There were a lot of times that I just accepted that I would never have energy. Luckily there was a part of me that would not give up on finding the answers.

After a few weeks of significant fatigue, I was frustrated enough to return to my endocrinologist.

Energy journal

In preparation for the return to my physician, I kept an “energy journal.” I kept track of when I went to sleep and woke up, my general schedule for the day, and my level of fatigue. This journal showed that my lifestyle was that of a typical 30-year-old.

Luckily, I had recently had labs taken that showed that my thyroid function and basic lab work were normal. With that combination of data, my doctor suggested a sleep study. From there, I received my diagnosis and began treatment for the issue that had really been behind my low energy: obstructive sleep apnea.

OSA diagnosis

Now that I am using a CPAP (continuous positive airway pressure) machine, I've seen a drastic improvement in my energy levels. My daily lifestyle remains the same but the absence of overwhelming fatigue means that I am more present in my everyday life!

Did your health care provider also suggest that your symptoms were "lifestyle" related before your sleep apnea diagnosis? Please share a comment.