My recovery from ME/CFS - part one: and … go!
Hello again, everyone, and sorry for the delay. I was in a bit of a relapse situation, as is very common during recovery, but the brain fog is lifting so here we go.
In my last post I referred to some factors of my illness as cues. Why? As you know, I also work in opera, ballet and theater (and a little television back in the day). In the backstage world, cues are little timestamps in the play or show that indicate that something is supposed to happen or change, like a kabuki curtain falling (an effect I love) or someone entering the scene. These cues are timed by either music or other reference points in the procedure and are overseen by, in our case, one or several stage managers. When the time has come, they will shout or whisper (depending on the current music volume) ‘Stand by for cue 38. And … go!’, which will then set stage technicians or singers or dancers into motion. Each cue also has a consecutive number so there are no mix ups (theoretically).
So basically, you see the singer step forward on stage, swinging his glittery pole around, and you’re like, huh, that’s the cue for our aerealist to be lowered onto the scene. Except that it doesn’t happen because the machine broke and the aerealist is basically stuck in between fly bars thirty feet in the air for twenty minutes, but that’s a story for another day.
Why am I telling you this? (Apart from the fact that stage life is cool and I can’t stop gushing about it.) Because well before I actually started working on my recovery, time and again a little innocuous cue prompted me to look at my illness and understand. At the time, I just didn’t take them seriously yet, postponed my reaction or overlooked them entirely. Which is, like, human consciousness 101.
Before we get into the cues and what they were telling me, here’s where I was at when they finally hit me. In my last post, I detailed my condition at my worst. At that point, I cried pretty much every single day and sometimes counted the hours until it was time for bed because sleep would make everything go away for a while. It was all just extremely unclear. It was unclear if any doctor would ever find something structurally wrong with me. It was unclear if I actually had ME/CFS because everyone was reluctant to give me the official diagnosis, despite everything else being ruled out. It was unclear how my life was going to continue and how far I was going to deteriorate. It was unclear how I would manage the situation financially in the long run, as a freelancer. And it was unclear how I was supposed to live with that amount of pain, unresponsive to meds (except for the side effects, yay), for an indefinite amount of time. Rough.
To give you a quick idea of the medical help I was receiving: I reached out to the pain specialist who had treated me for endometriosis a few years prior. They wanted me to fill out a fourteen page questionnaire which, in my state, took several days and worsened my symptoms. When the secretary got back to me, she said the doctor had looked at my file (I had also attached an overview of what’s been done so far and what I needed) and said ‘We can’t treat you.’ That was it. No further explanation. That was pretty much the standard experience.
In early March, my neurologist appointment was finally up (which my mum had gotten for me by being on hold for thirty minutes, brave her). The drive was a full hour and we waited for twenty minutes, me in my sunglasses and leaning onto anything I could find because it was exhausting to sit for so long. I got an EEG done and was finally told in a five minute monologue that he couldn’t find anything and was sending me over to an MRI. No, he was not going to diagnose me, and something in his demeanor (which got confirmed in a follow-up appointment much later) told me that he wasn’t really expecting anything to be wrong with me.
There were often weeks or months between these appointments (or lack thereof) and when I came home that day, head exploding and going into hibernation for the following four days, I think I was just angry. The general lack of care and respect for patients who are clearly suffering tremendously made me stubborn enough to be like: If you won’t help me, I’m going to do this on my own.
And so, when I lay there, humming to myself to alleviate my headache, I went on my phone and, in small one to five minute increments I typed ‘How I recovered from CFS’ into the YouTube search bar. As with anything in life, there were probably people who had done it before me. With my eyes closed because it hurt too much, I listened to Raelan Agle detailing her own recovery from ME/CFS a few years ago. And while she was talking, I started picking up on those cues from prior months. Here’s what they were.
My symptoms (fatigue, heaviness, brain fog, headaches, throat pain, pressure on chest) hadn’t been consistent over time. Some of them had even vanished altogether while new symptoms had popped up out of nowhere.
There was, so far, no major structural reason to be found for why my health was deteriorating so much. And even if a mitochondria test (which I had wanted to get for a long time) would reveal malfunctions or my upcoming MRI would show neuroinflammation, no one could fix that with medication or procedures.
My symptoms had started after a very stressful phase of my life had come to an end.
I was in trauma therapy before so I knew that my body was still dealing with childhood and youth stuff.
The same triggers (cognitive tasks, physical exertion etc.) didn’t always cause the same intensity of symptoms.
When emotionally overwhelmed or fearful of the future, my symptoms got much worse.
I had known my body to show inexplicable symptoms (IBS, back pain, rashes etc.) all my life.
I later learned that those are the exact criteria Alan Gordon uses to identify neuroplastic pain as opposed to structural pain. I was checking all the boxes. For what? Well, for experiencing not a physical illness but a mind-body (aka psychosomatic) condition. Oof.
But even as the realization dawned on me, I remained skeptical. First of all, I still fully expected to hear a bunch of woo woo about supplements and positive thinking at some point in the video (didn’t happen, thanks Raelan). And second, there was a lot of internal resistance to this idea, especially in my case.
In 2022, after fifteen years of suffering through intense monthly pain for which I was eventually being prescribed opioids (that I never took because I was scared), I was finally diagnosed with endometriosis and received surgery. The tissue where no tissue belonged as well as my uterus were being removed and I have since been relieved of my pain almost entirely (sometimes there’s a little bit but it’s gotten rare). The reason it had taken fifteen years to get the procedure was that despite the late confirmation that it was, in fact, a structural illness, almost no doctor had believed me. So trust me when I say that leaning into the ‘it’s just stress’ narrative (which is not what psychosomatic illness is about, as I later learned) wasn’t something I was prepared for.
Furthermore, it is really, and I mean really, hard to believe that something like my severe ‘brain burn’, as I called it, PEM or a chronically inflamed throat can be psychosomatic. I have since seen people recover from even crazier symptoms with a mind-body approach but initially, you’re like: no. way. Especially since the official medical model of ME/CFS is that it’s multi-systemic, neuro-immunological, severe, incurable. If you hear this often enough, you believe it, and the intensity of your symptoms makes it very easy.
With psychosomatic or mind-body conditions, there are a lot of misconceptions that even doctors have stuck in their head and that make it very hard to accept you actually have one:
For some reason, stress-related illnesses seem to get less attention because doctors are only there to treat ‘the real stuff’. Stupid.
Psychosomatic illness is not equivalent to ‘you have stress in your life’. There are more complex explanations for why your body is exhibiting symptoms without structural cause.
Findings in labs and MRIs that are abnormal are immediately seen as proof that the pain comes from there, despite numerous studies that show little correlation between structural findings and pain, for instance with back pain.
We associate psychosomatic illness with being ‘emotionally weak’ so having an ‘actual’ disease with a name and a bio-chemical explanation makes us feel a little better.
Some people have the misguided idea that you are somehow responsible for this condition happening to you if it’s mind-body. Nah. I didn’t choose my trauma either.
Speaking of trauma, many people believe that their childhood or adult life experiences don’t ‘qualify’ for a good reason for mind-body issues. Like, ‘oh, but it wasn’t that bad.’ Well. You might be surprised.
And - saving the best for last - psychosomatic illness does not mean it’s in your head, as in, you make up the pain, you can snap out of it or you’re exaggerating. It is in your head, as every pain is happening in your head (brain), but in the acute phase of it happening, you have about as much control over it as you have over a heart attack (which is also, as we know, a result of stress).
All that is to say, when I listened to Raelan’s story, I was unsure but curious - she fully recovered many years ago, after all. I still struggled with some of the ideas in the list above, and understandably so, but with the medical model of my condition I had adapted before, there was no hope. Partial improvement maybe, but I would never fully recover. Seeing this as mind-body would change everything, but I was also aware of the potential false hope. Nevertheless, I kept digging, and over the next few days I found that there are actually a lot of people out there who have fully recovered, many of them sick for much longer than me and much more severely, including quite a few who did have abnormal lab results or structural findings. And on average, their level of critical awareness was similar to mine. So maybe I was actually on to something.
Now, before we get all worked up, I’m not going to deny anyone’s experience of ME/CFS as a strucural illness. Obviously. My own experience had been denied many times before. I’m stating what I’ve found (and have seen backed up by science since then) to indicate that for the first time, I had reason to believe that I could actually get out of all this.
I’m not known for being a believer. I play the devil’s advocate in discussions out of habit - because I want all sides to be seen. I seldom take a stance, and when I do, I have often changed it over the years when I realized that I had been wrong. When forced to ‘make up my mind’, my viewpoints will often shift from day to day based on the current evidence. So even with all these new insights in mind, in most moments on most days, it was hard to imagine that there was no structural reason for my condition. Why would my brain make me suffer so much? I couldn’t make my own breakfast, I couldn’t talk to my friends, I couldn’t go outside.
But luckily, I didn’t have to believe in anything to get started. And by the way, to this day I haven’t fully given up the idea that as a sort of catalyst to all of this, something maybe did happen to my body. While pre-Covid, many people correlated ME/CFS with EBV infections, nowadays there’s a lot more talk about lingering Covid viruses and spike proteins from the vaccine. I had had reactions to all three and it seems ignorant to rule out the possibility that they are involved in it all, but what changed everything for me was to allow for the possibility that there was a different explanation underneath all this. And I will talk more about what that entailed and how I got on track with my recovery in my next post of this series. I know this was a long one and I still feel like I couldn’t do it all justice but it’s a start. See ya, folks.