A recent opinion piece by a professor of medical ethics at the university of Oslo, on how patients can be declared recovered but still not healthy. A fictive cancer patient is used as an example throughout the text. I thought others might find the opinion piece interesting since we can often be told as pwME that we can be recovered despite having ongoing symptoms, and the importance certain groups place on our "illness narratives". Forskning.no: I've recovered, but I'm not healthy I especially like how at the start the patient "doesn't feel completely well", but later she has few or no health challenges, and at the end having this feeling of not being completely well is apparently not an experience of illness at all.
In the case of cancer, particularly, could it not be due to the treatments? They are pretty horrible.
It definitely could, but as with other with "invisible" ailments post-cancer-treatment fatigue/other symptoms are not taken seriously. Which I think is symoblised here as it's not even mentioned as a possibility.
I've read the article twice, but it doesn't say why she doesn't feel completely well. It sounded more like psychological than anything physical. That said, I think the definition of recovery is personal one. Clinical definition of ME/CFS recovery is something fairly minimal like being able to take care of yourself and be socially functional. You could still suffer from PEM and unable to walk more than a few km, but you could be clinically recovered as long as you can take care of ADL and support yourself. I decided to declare that I recovered even though I still suffer PEM because I can backpack through The Sierras or climb fourteeners in the Rockies. I could call myself "recovered with limitation", but any mention of ME/CFS associated with me would minimize the seriousness of ME/CFS in uninitiated minds. Personally, I'd stay away from psychological babble about not feeling well and stick to physical definition of recovery, like getting back the pre-illness ability, adjusted for the age. ME/CFS is already minimized enough, there is no need to add "mental" definition to ME/CFS.
I can physically do stuff that I didn't dream about a year or two ago. Yet I'm somehow still quite impaired in ways that I can't fully comprehend. The change is confusing, and I can understand how some people don't like to think of themselves as being sick even if they continue to have impairment. If one can function well enough despite impairments, there can be the desire to assume a new identity that's no longer based on being sick. I don't agree with that because beliefs should reflect reality, not be a tool to comfort ourselves and give us motivation, which is how I perceive this way of thinking.
In 2012 I got rid of my fatigue for months, after two months of forced bed rest in hospital after I shattered my ankle and had surgery. Every other symptom remained, just not fatigue. I was also on blood thinners for those two months. Getting rid of fatigue did not equate to recovery at all. Yet so many psychogenic proponents seem to think fatigue is all there is. We have more than fatigue. We have more than PEM. We have more than (fill in the blank).
