Personal limits in sickness and our mental models of them

[Hoopoe]

I feel that this is relevant to discussions about patient beliefs, interoception, illness identity, placebo effects, and attempts to cure patients by manipulating their perception or motivating them to do more. I believe that many healthcare professionals do not understand this topic well.

We know what our limits are by experience. By frequently putting ourselves to the test, we gradually build a mental model of our limits. The mental model is an approximation of reality. Since the illness is often fluctuating and hard to understand, the model is often frustratingly flawed.

A misunderstanding can arise when another person assumes that the patient has constructed a model that has little relation to reality. In this interpretation, the patient merely has to believe that they can do more. And due to the delayed nature of PEM and slowly accumulating PEM this interpretation can appear, at least in some moments and when not observed over longer periods, as having merit.

Someone with a physiology that is able to adapt to increases in activity will tend to assume that the physiology of patients is the same.

If the underlying disease improves, the patient will experience a phase marked by optimism and dismanting of the mental model that is no longer appropriate.

If however, the patient falsely believes that they can do more (due to fluctuations in illness severity, expectations, hopes, manipulation of perception) they can also experience a similar phase, but it won't last. Reality will set in again.

 

[Axel]

Now, my greatest fear is that the PEM will collapse on top of me. That’s what’s going to happen, whether I’m afraid of it or not. Whether I believe it or not, it makes no difference.

Realising that this was largely due to physical exertion and limiting such activities, then seeing the results, was a major step forward.

I’ve suffered from it all my life, without ever being able to make a clear link to physical exertion, and for a long time I was able to recover my normal functioning (which felt very pleasant by comparison). My thoughts on the matter were complex, but I know I assumed that everyone suffered from PEM, and what was wrong with me was that I was afraid of it, that I couldn’t cope when it happened, unlike others who would have found ways (both practical and psychological) to get through it.

All this to say that the misunderstanding can also lie with the patient, because until we have clear accounts of what we’re supposed to feel after a good night’s sleep or a work out (and that is a stable and reproduced effect), we can’t just make it up.