Chasing an elusive diagnosis (burnout, part 13)
The inadequacy of burnout labels and my quest to find the true source of my symptoms
Last week I wrote about my decision to quit coffee and alcohol. While I'd worked through a lot of my issues that led to burnout and ventured deeper into my spiritual journey, I was still experiencing strong physical and emotional turbulence. Cutting coffee and alcohol were big steps but didn't seem to completely solve my symptoms. It was time to get to the bottom of this. (Btw, this post is too long for email so please open in the Substack app to read the full newsletter)
1/ Moving beyond the burnout diagnosis
I woke up I feeling irritable and sensitive. Was it something I ate the night before? I tried to meditate, but this seemed to have minimal impact. I was planning to take my dog for a walk at a large park nearby. My wife and I got about 300 meters down the street when I started to feel ill. A mixture of irritation, fear and other strong emotions washed over me. We turned around and went back home, my head hanging in defeat.
It didn't make any sense. I'd removed myself from my main source of stress. My startup was on the back-burner and I was still paying myself a small salary. I'd reduced my caffeine and alcohol intake, and eventually cut it entirely. I was exercising frequently and meditating daily. Overall, I was enjoying life. And yet, there would be days like this where life seemed difficult for no identifiable reason. I was frustrated and determined to figure out what the heck was going on.
There were certain activities that would start to exacerbate the feeling of stress and anxiety, like going to the sauna or even taking a cold shower, which normally would reduce my stress. Weird, right? Perhaps my body couldn't handle very much stress — whether it was physical or psychological — because I hadn't fully recovered from burnout. This sensitivity to stress created a cascading effect that made it harder to regulate my emotions, causing me to well up when things got even a little bit tough.
However, thinking about my symptoms under an all-encompassing "burnout" label proved to be a dead-end. There has been a lot of time spent trying to treat burnout, but less time agreeing on a clear definition. This makes it difficult to really know if you have burnout or something else, mainly because there is so much crossover with other disorders and syndromes.
Burnout is recognized by the WHO as a clinical diagnosis globally but not considered a medical diagnosis in most countries, except for some progressive European countries like The Netherlands. When I lived in the Netherlands, it was fairly easy to get a therapist. Therapy was helpful, as I've written about. But otherwise, the advice for burnout recovery was to rest, eat healthy, and change your job. All of which I'd already checked off the list.
More so than that, it didn't feel like I was burnt out, because I was hardly working any more and had nothing to be burnt out from. I also didn’t feel depressed or anxious most of the time, and I wasn’t having flashbacks like I’d heard about in PTSD patients.
This all led me to get more specific and look for a medical diagnosis that could have been caused by my stressful burnout experience. My first theory was that I had a lingering hormonal issue. It felt like my response to stress wasn't working properly, as if some mechanism was off. So I started to look into the function of cortisol, the stress response and how it impacts your body.
2/ The adrenal hypothesis
When looking into the more serious physical impacts of burnout, I often came across mention of adrenal issues. I'd heard of athletes "pushing their adrenals" through overtraining, but adrenal issues can appear through any sort of prolonged and excessive stress, whether that's working at your startup or training for an ultramarathon.
Your adrenal glands live on top of your kidneys and help you out by making hormones, including cortisol and adrenaline, when you're feeling stressed. When your brain thinks there's danger, like seeing a big dog or receiving an email at 10pm from your boss (your brain doesn't know the difference), it sends a signal to your adrenal glands to release adrenaline. This makes you feel more awake and alert, and helps you stay calm so you don't get too scared. It helps you take action.
But if you experience stress every day without giving your body time to recover — say, by working incessantly in isolation and checking your Slack messages every waking hour — then your cortisol stays elevated and your baseline actually changes. This is chronic stress. Your cortisol level is never able to come back to its original level, because you haven't had the time to rest. And that messes shit up.
"Chronically elevated cortisol levels now cause damage to hippocampal and cortical neurons, which are the main regions where the feedback inhibition starts. As a result, even when stress stimuli disappear, cortisol levels could be maintained at higher levels beyond the physiologically normal range due to a vicious cycle caused by the already damaged feedback mechanism."
I probably don't need to convince you on this one, but there's about a hundred reasons this is bad. Chronically elevated cortisol levels lead to increased inflammatory cytokines, elevated blood pressure, gaining weight, insulin resistance, hypertension, diabetes, obesity, coronary heart disease, neurodegenerative disorders — just to mention a few.
Could it be that I had a new, higher baseline of stress that lead to this vicious cycle of never really recovering? This could explain why even very small stressors tended to set me off and send me spiraling towards further anxiety. Having researched this, and knowing that many people with burnout also get adrenal issues, I self-diagnosed myself with an adrenal issue.
The problem was that like burnout, "adrenal fatigue" wasn't a medical diagnosis, either. The symptoms were vague. Now, something called adrenal insufficiency, on the other hand, is medically recognized. But adrenal insufficiency is marked by decreased, not increased levels of cortisol production. Basically, your body has a hard time producing the same amount of cortisol because you've been redlining your stress for so long, and now your cortisol is chronically low. This causes fatigue, hunger, dizzyness, weight loss, and weakness.
I remember that first major burnout episode, I was taking several naps a day and was constantly famished. It's very possible I did experience some adrenal issues at that time. Also, in moments where I felt very stressed, and I was drinking lots of coffee, this could occasionally spiral out of control and leave me exhausted and numb.
But most of the time, I was not feeling weak, dizzy, or losing weight. I felt like I had a decent amount of energy, and I was eating and sleeping normally (according to my own analysis, and my Oura ring). The more I looked, the less convinced I was about the adrenal explanation. It was too simple, and didn't quite fit. I kept digging.
3/ Further down the rabbit hole
The body is a complex machine, and the adrenal glands are just a small part of the equation. I found that this sort of cortisol dysregulation isn't just about cortisol production, but about a neurotransmitter dysfunction too. Brain stuff. Burnout researcher Dr. Lam says that "those who experience chronic burnout show marked changes in their amygdala's and in their ability to regulate negative emotions." Okay, seeing as my mood played a big part in my symptoms, I felt like I was on to something.
The interplay between your brain, adrenal glands, and pituitary gland is called the "hypothalamic-pituitary-adrenal (HPA) Axis." That's a mouthful, so here's a descriptive analogy:
"The HPA axis is like a three-person band, with each member playing a different instrument. The hypothalamus is like the bandleader, conducting the entire orchestra of hormones and sending signals to the pituitary gland. The pituitary gland is like the lead guitarist, receiving signals from the bandleader and playing its own tune in response by releasing or suppressing certain hormones. Finally, the adrenal glands are like the drummers, providing the steady beat for the whole band by producing hormones like cortisol that regulate the body's stress response."
Following this analogy, when everything is working smoothly, it's like an awesome jam session. Each member of the band plays their part in perfect unison. But when the HPA axis is dysregulated, like I believed it was in my case, it's like the bandleader and lead guitarist are on different pages, and the drummer is doing their own thing. Sort of like when Keith Moon from The Who planted some cherry bombs in his drum kit, underestimating the size of the explosion.
The result is a chaotic and uncoordinated performance, leading to imbalances in hormone levels and potentially causing health issues. HPA axis dysregulation is a medically recongnized condition and has been linked to depression, anxiety, and chronic fatigue syndrome. The more I read about HPA-axis dysregulation, the more it seemed to explain a lot of my symptoms. My body and mind were marching to different tunes.
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