hotblack
Senior Member (Voting Rights)
Exactly. I flagged this earlier in the thread too. I’m repeating myself but as I said then, words matter, meaning matters
All professions have their own jargon. But when it means something which is not only different to common and dictionary definitions but that difference and confusion has been used against the best interests of patients there is something which needs to change.
I’ve heard of the word habilitation being used, but the context seems a little different. The recognition that needing to come up with a different word seems helpful though. You wouldn’t rehabilitate someone with a permanent visual impairment. You cannot. Nor can you rehabilitate someone with ME/CFS. I think clarity here would help a great deal.
And I actually think changing the word used could be a great advocacy tool and something which could help people more widely, both professionals and patients. Explain the problems with the word snd why you are using something else. That would build trust with patients and help educate other professionals.
The sad fact is many healthcare professionals mean rehabilitation when they say rehabilitation in respect to people with ME/CFS. They do still think we can make ourselves better with the right support. We have an entire health system that is still based on that idea and most of us face that reality repeatedly and many have frankly been harmed by it. They think we can (and should) adapt to the healthcare offered no matter how inappropriate and that not doing so is a choice not a physical limitation. Recognition of that reality is really important.
Having a group of professionals rethink and change the language they use seems a pretty small thing to ask in this context. But also one which could have a significant positive impact in educating the wider healthcare profession on the important differences here. That they can help us but they cannot restore us to health. That they can make small changes which make a significant positive difference to our interactions and experiences of the healthcare system that we cannot do alone. That trust can be rebuilt even if mistakes have been made. And that its the healthcare professionals that needs to change attitudes, understanding and beliefs here not patients.
Patients are here waiting and willing, but we’re too often faced by professionals who are not there yet.