Category talk:People living with ME, CFS, and/or FM
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Just listened to an activist at the CFSAC meeting who explained the concept of microaggressions against people with ME/CFS. She recommended that instead of describing someone as a "patient," use "person with ME/CFS" since we are not always patients, but are, also, spouses, parents, siblings, friends, etc. With that in mind, I'm suggesting a discussion whether the wording of this category be changed. On many pages, esp those about research that use patients or "patient groups," the wording can remain the same, as "patient" may be more accurate. But on individual bio pages, the wording "person with ME/CFS" may be more accurate. Looking forward to feedback. Kmdenmark (talk) 13:30, 12 January 2017 (PST)
- The current category name 'People living with...' doesn't work because it includes diseased patients (and probably ex-CFS patients, too). Also, 'living with' suggests that it's not disease per se, but some random kind of condition, and/or something to be ashamed of. As an ME patient, I definitely prefer the neutral and accurate term patient. Guido den Broeder (talk) 10:45, 1 February 2017 (PST)
- Guido, I want you to be as comfortable as possible with the terminology used in your bio page. If you want the category do be Category: ME patient, I will gladly change it for you. Here in the US, the expression "living with" does not denote a random condition or something to be ashamed of. It is the more common expression used when describing people who have a serious and chronic illness. Lupus Research Institute uses "living with lupus," National Multiple Sclerosis Society uses "living with MS," the ALS Association uses "living with ALS," and, possibly the best known example is, the many patient groups who use "living with HIV/AIDS." This difference may be a cultural one. But I wish to represent your choice correctly. Kmdenmark (talk) 00:29, 2 February 2017 (PST)
- 'Living with' also sounds like acceptance. I would rather say 'battling with'. It furthermore suggests that life would be less comfortable but just as long, which is not the case with immune disorders. Guido den Broeder (talk) 16:38, 7 February 2017 (PST)
- A battle is something you can win, like battling cancer with drugs and therapies. AIDS is now a chronic illness due to medications and CFS is a chronic illness due to not having medications... you live with it forever. So living with is actually more appropriate because at this time this is not a winnable situation. "A Person Living With Aids" is not trivial in any way and they are not battling because at this time it is not winnable, you are chronic and will eventually die from AIDS or an AIDS related disease/illness.--DxCFS (talk) 17:07, 7 February 2017 (PST) (Forgot stamp before.)
- I was just watching Geronimo who fought a battle he could not win, but still kept fighting, so that's not it. It's not a cultural difference either. I think this source explains it well: the expression 'living with' was introduced because people stated that they were doing fine despite their disease, and no longer wanted to continuously hear 'suffering from' or be defined by their illness. People with ME, however, are not doing well. At best we get by, but we are a shadow of our former self. Guido den Broeder (talk) 16:56, 7 February 2017 (PST)
- If you say "battling" people will assume you can even put up a battle. So it just is NOT the word to use. If anything, we can take "living" out and not sub anything. "Person with ME, CFS and/or FMS" could be used but "battling" is less acceptable to me than "living". --DxCFS (talk) 17:07, 7 February 2017 (PST)
- I was just watching Geronimo who fought a battle he could not win, but still kept fighting, so that's not it. It's not a cultural difference either. I think this source explains it well: the expression 'living with' was introduced because people stated that they were doing fine despite their disease, and no longer wanted to continuously hear 'suffering from' or be defined by their illness. People with ME, however, are not doing well. At best we get by, but we are a shadow of our former self. Guido den Broeder (talk) 16:56, 7 February 2017 (PST)
- A battle is something you can win, like battling cancer with drugs and therapies. AIDS is now a chronic illness due to medications and CFS is a chronic illness due to not having medications... you live with it forever. So living with is actually more appropriate because at this time this is not a winnable situation. "A Person Living With Aids" is not trivial in any way and they are not battling because at this time it is not winnable, you are chronic and will eventually die from AIDS or an AIDS related disease/illness.--DxCFS (talk) 17:07, 7 February 2017 (PST) (Forgot stamp before.)
- 'Living with' also sounds like acceptance. I would rather say 'battling with'. It furthermore suggests that life would be less comfortable but just as long, which is not the case with immune disorders. Guido den Broeder (talk) 16:38, 7 February 2017 (PST)
- Guido, I want you to be as comfortable as possible with the terminology used in your bio page. If you want the category do be Category: ME patient, I will gladly change it for you. Here in the US, the expression "living with" does not denote a random condition or something to be ashamed of. It is the more common expression used when describing people who have a serious and chronic illness. Lupus Research Institute uses "living with lupus," National Multiple Sclerosis Society uses "living with MS," the ALS Association uses "living with ALS," and, possibly the best known example is, the many patient groups who use "living with HIV/AIDS." This difference may be a cultural one. But I wish to represent your choice correctly. Kmdenmark (talk) 00:29, 2 February 2017 (PST)
