StellariaGraminea
Established Member
I really appreciate the rich & detailed discussion of PEM in this thread. If there is any aspect of my illness experience regarding which I feel I am on a different planet with respect to medical professionals, it's this.
One medical appointment I described PEM, not using the phrase (they wouldn't have recognised it) but described the experience, in as simple a way as I could given time constraints & the sense the professional was disinterested anyway. I focused on the sickness aspect: that activity makes me ill in a characteristic way and loss of function. I very very purposely avoided the words "fatigue" or "tired" or any related synonym. To me they are very clearly a separate concept and experience. I wanted the professional to listen and recognise the specific illness response / function loss of PEM.
Reading the clinic letter later, among other inaccuracies and omissions, there was just a one-liner "X suffers from tiredness" to summarise several years of severe illness that had put my entire life on hold. I can't explain how incredibly frustrating that was. I didn't suffer from "tiredness" and never have. But I think this is a pervasive problem where PEM is lost in translation. I don't bother describing it to other professionals anymore. They just do not have the slightest concept of it.
I have come across only a very small number of professionals online who really do seem to get it. That mostly seems to be because they have spent so long carefully listening to patients' experiences that they have started to recognise it.
That's why I think this discussion is so valuable and important. I am very glad the De Paul group have engaged on this thread and I really hope they are continuing to engage and reflect. It's so necessary to get this right.
One medical appointment I described PEM, not using the phrase (they wouldn't have recognised it) but described the experience, in as simple a way as I could given time constraints & the sense the professional was disinterested anyway. I focused on the sickness aspect: that activity makes me ill in a characteristic way and loss of function. I very very purposely avoided the words "fatigue" or "tired" or any related synonym. To me they are very clearly a separate concept and experience. I wanted the professional to listen and recognise the specific illness response / function loss of PEM.
Reading the clinic letter later, among other inaccuracies and omissions, there was just a one-liner "X suffers from tiredness" to summarise several years of severe illness that had put my entire life on hold. I can't explain how incredibly frustrating that was. I didn't suffer from "tiredness" and never have. But I think this is a pervasive problem where PEM is lost in translation. I don't bother describing it to other professionals anymore. They just do not have the slightest concept of it.
I have come across only a very small number of professionals online who really do seem to get it. That mostly seems to be because they have spent so long carefully listening to patients' experiences that they have started to recognise it.
That's why I think this discussion is so valuable and important. I am very glad the De Paul group have engaged on this thread and I really hope they are continuing to engage and reflect. It's so necessary to get this right.
