I generally try to keep this blog on the scientific side, even the musings, and personal anecdotes are just that: anecdotes used to make a point. This will be more of a rant, but it does serve a purpose: to illustrate how medical professionals assume that people with myalgic encephalomyelitis don’t know their bodies, don’t know what’s best for them, and don’t “do as much as they could.”
The other day, I was telling my specialist about how I experimented with swimming over the summer and how I plan to continue experimenting at home with elastic bands, etc., over the winter, as the next indoor pool is too far away. I was excited and happy about what I had managed—and without PEM at that!
He just nodded and replied: “Hm, maybe we should think about getting you a physio who can give you some exercises.” *
What follows are all the things I did not tell him (but might during our next appointment) because, once more, I was caught off guard and unable to give a pointed response.
First, I can only do those experiments at the expense of pretty much all other activities, including the (according to the bio-psycho-social crowd) oh-so-important social interactions, and because I have someone who does the grocery shopping, laundry, and cleaning—all things that are harder on my body than any marathon training or night of climbing ever was.
Second, I used to be an athlete (and the doctor knows this!). I know how to move. I don’t need anyone to tell me how. I shared my experience with him as part of a general health update and in a way that, I had assumed, showed that I knew exactly what I was doing.
But, as a former athlete, I also know how my body is supposed to react to exertion. And it doesn’t do that anymore. All my experience counts for nothing. I have to get to know my body all over again, and mistakes like the ones I made when I first started intense exercise are not allowed because PEM is quite a bit more serious than DOMS.
Third, I have a physio. One who took the time to learn about PEM. One who understands what “exercising” costs me. One who is happy for me when I have successes like last summer. One who, instead of demanding more, cautions me to be careful and to slow down. One I can bounce ideas off and who understands that, no matter what he suggests or what we come up with together, I am the one in charge. He is amazing. He has been my rock since I had a herniated disk, and the last thing he would do is recommend random exercises.
The reason this riles me up so much is that, when I had that herniated disk, years before I got myalgic encephalomyelitis, I had a very different experience. The neurologist I saw then said something like: “You might not even need physio. You move enough, you know how and you will figure out what you can do and when.” So, he clearly trusted me to know my body best, to keep moving as best I could, and even to basically rehab myself. Nobody suggested I needed professional guidance to avoid deconditioning or because I was “afraid of movement,” even though, ironically, back then I was afraid for a while.
And I don’t think those completely different experiences are because those were different doctors. I think it goes much deeper than that. It’s a systemic issue.
Because a similar thing happened in how my behavior was interpreted. The day my disk herniated, I was packing to go on a week-long mountaineering course whose successful completion would have allowed me to guide hikes for the mountaineering club. I had prepared for months. I wasn’t going to let a bit of pain stop me. Besides, I only had pain when sitting and lying down. Hiking and climbing were no problem. And it didn’t even occur to me that I might have a herniated disk. So, I successfully completed the course and then went to the doctor. This behavior was met with a bit of a frown but, ultimately, it was interpreted as positive. Clearly, I was willing to push through pain and keep moving, which would serve me well in rehabbing a back injury.
When I did not recover after my COVID infection, I pushed through because I had a grant proposal deadline to meet. I knew I had Long Covid, but it didn’t occur to me that I might have PEM or myalgic encephalomyelitis (nobody had warned me about that, and everybody told me I would recover within x months). Yet my pushing through in this situation was later framed as OCD by a doctor. Again, a similar situation, the same behavior on my part, but with very different interpretations. In one case, I was met with understanding and even approval. In the other, my behavior was psychopathologized.
And I think the reason for these different interpretations of the same behavior in two different situations is that the herniated disk can be seen on an MRI. Easy proof that the body is indeed broken.
With Long Covid and myalgic encephalomyelitis, many of the physiological abnormalities found, including impaired recovery after exertion, cannot currently be shown using routine clinical tests. In many cases, you need to be in a research setting to obtain objective evidence that something is wrong in the body.
Due to this difficulty in obtaining objective evidence of the illness and the history of psychologization of myalgic encephalomyelitis, the narrative of the patient who is afraid of movement or, worse, too lazy to move is deeply ingrained in many doctors, if only subconsciously.
And that results in many doctors thinking that their patients cannot be trusted to know their bodies best. They think patients need a professional who tells them how to move, who “gives them exercises,” even when those patients have just explained the extreme measures they have to take to get some movement in. Besides, many people with myalgic encephalomyelitis overexert just by doing activities of daily living. Brushing one’s teeth can be the physiological equivalent of a full-body workout. There is no capacity left for “exercise.”
And there is another narrative, closely linked to that of the incompetent patient. It’s the idea that people with myalgic encephalomyelitis “overpace” or “don’t do enough.” There is this expectation that we should do “as much as we can.” Well, a healthy person, in principle, has the physical capacity to run a marathon, and many recreational marathon runners train on top of a full-time job, family, friends, and other hobbies. That is probably pretty close to doing “as much as you can” for a healthy person. Yet most people don’t train for marathons alongside a full-time job. They don’t fill every waking hour to the brim with activities. Every body and mind needs downtime.
Yet that is essentially what is asked of people with myalgic encephalomyelitis: “Do as much as you can without triggering PEM.” Most of us want to do as much as we can because we want to live. And even those who manage to pace perfectly and never have PEM still use more of their body’s capacity than the average healthy person uses in everyday life.
I’ve been called “crazy” for some of the endurance feats and challenges I did when healthy and been told to be careful not to overexert. Yet now, when I exert my body a lot more (relatively speaking), I am told I need a professional who “gives me exercises.” In what world does that make sense?
*I should note that, in general, my specialist is good. He is knowledgeable about the pathophysiology of Long Covid and myalgic encephalomyelitis, is on top of the latest biomedical research, and is open to off-label experiments. But every so often, his mind seems to slip and old dogmas shine through. And maybe that makes this incident that much worse. He should know better, but something makes him say things like that.