QUOTE=alphahusky;66870]I think I plainly pointed out that "tired" is a very inaccurate way to describe the level of exhaustion most ME/CFS patients experience. [/QUOTE]
I wasn’t trying to describe the level of exhaustion that most CFS/ME patients experience, I was just pointing out that a discussion on a forum like this would be more suitable for tired patients than a live debate. I do not think there’s anything wrong with that.
I don’t think that there’s anything inherently trivialising about the word ‘tired’, but I do know, and have said, that it can play into the prejudices of others. I think that distorting our behaviour to account for this can end up just creating other prejudices though. To me, it seems best if we just try to communicate honestly and clearly, and didn’t let our use of language be determined by the prejudices of others.
Right – but they do get tired, and acknowledging that does nothing to dismiss the hardship of their experiences.
I’ve not.
I have some experience and knowledge. I understand the politics which underpin people’s reactions – but I do not think they justify these reactions though.
I think it’s very difficult to express in words the subjective experience related to CFS. I don’t think ‘exhausted’ really carries much more information than ‘tired’. I don’t think we can expect individual words to do much of the work for us here, and real explanation would require an in-depth conversation and a prolonged examination of all the terms being used, relating them to the experiences of the other side as well as your own.
I don’t find it insulting. But I think it was more insulting than anything I said.
I understand this. I know that having CFS is difficult, especially when patients are so often poorly treated – but I don’t want to have my behaviour driven by the prejudices of others. I am tired. I’m far less lazy than when I was well, but sometimes I’m lazy, and I don’t want to feel unable to be honest about this just because I’m scared that it will play in to the prejudices of others. I understand if others don’t want to talk in this way, but I don’t think they have any credible reason for attacking me for doing so.
Certainly, from some of the responses here, some people are too hung up about this word. It’s not (' ')* (although the hilarious reaction of some to the un-starred word rather proves my points about misplaced sensitivities) and even if it were – lets reclaim it!
I don’t think that being tired can always be so easily resolved.
Tiredness can refer to all sorts – from the pleasant doziness that comes after an enjoyable day as you tuck yourself into bed, to the feeling of your body collapsing as the final stages of starvation take hold. You may associate tiredness with pleasurable memories, but that is not all it can refer to.
I would be to – but I’m often amazed at what some people manage to be insulted by.
That’s okay. I may have assumed you’d read some of the other posts where I’ve had to discuss this comment – as there have been a few. Sorry if that meant I was too harsh in my reply.
*allusion to a word with negative connotations removed. _mod
I wasn’t trying to describe the level of exhaustion that most CFS/ME patients experience, I was just pointing out that a discussion on a forum like this would be more suitable for tired patients than a live debate. I do not think there’s anything wrong with that.
I That's why you are getting so many negative responses to using the word. Do you not feel it is a bit trivializing of the disease to continually label a symptom as "being tired?" I doubt most cancer patients would sigh with a smile and wave someone off, saying, "Oh, I'm tired today," when asked if they feel like spending the day doing some activity.
I As the family member of several people who died of cancer, while they have used the word "tired," it's rarely the way they describe how they feel as they get into those last days. More like, "exhausted." And that was my point.
I I don't know if you said this is our only problem.
I But you said, "Tired patients" and "often tired," two phrases that are often used to brush us off. Have you no experience with the psychologizers out there? This is a legit question. Perhaps you aren't up on the politics going on here.
I But I don't use the phrase "tired" often. That's why I said I'd love to be tired. And then I explained why- because tired is not at all how I experience the "fatigue" in this disease. Tired, to me, is a welcome feeling that usually precedes really refreshing sleep, experienced as something that can be easily gotten rid of by some rest. "Tired" just does not describe the feeling of exhaustion we feel. Surely, as a sufferer, you have to agree that "being tired" just is not an accurate description, and that it is a poor descriptor of the level of, okay, "tiredness" that we experience.
I You find me trying to describe the depth of the exhaustion we feel, and compairing it to "tiredness," a feeling I think I clearly described as something that can easily be solved by healthy people, insulting? Okay! I was trying to clarify for you why so many were put off by the use of that particular word.
I Since I've had this disease for 25 1/2 years, and perhaps have been far more involved in the politics and experienced the deniers of this disease for much longer, I would never use the word "tired," nor would I say, "often tired." I would use the phrase "exhausted" (I don't used "fatigued" either- it trivializes the level of beyond-the-wall, unbelievable physical and mental exhaustion that doesn't leave no matter what steps you take to battle it back).
I Perhaps you are feeling like others are too "hung up" on that word. Maybe that's why your post to me is so dismissive.
I could hardly have been clearer. I I would love to be tired, because tired is something that can be gotten rid of by a night of sleep, some rest, eating- even sometimes watching a movie.
I I vaguely remember "tired." There is no way in this world that what I experience 24-7, for more than a quarter of a century right now, is anything like "tired." Particularly with my extreme difficulties with sleep. I remember tired as something almost pleasant that preceded sleep.
I That is quite clearly what I meant. If anyone else is "insulted" by my very, very clear descriptions, I'd be surprised.
I And thank you for updating me on the fact that you are a patient, and that your partner is as well. I do not have the energy to go back and read all these posts. It clarifies for me that I'm speaking with someone who should clearly understand the difference between the entirely wiped out, life destroying "fatigue" we experience, and being "often tired." I was not trying to imply you were dismissing the entire disease as just "being tired." But I was curious. Your response cleared that up for me.
*allusion to a word with negative connotations removed. _mod