I think, in an able-bodied world, and most importantly, in a able-bodied medical system, we as physically disabled people have to stop trying to assess our impairments from the POV of our own thresholds of pain, fatigue and other dysfunctions.
I struggle with this a lot as well, but if we're trying to get accommodations and treatments in a system created by and for abled and usually healthy bodies we have to speak their language and it really is a matter of having to constantly translate back and forth.
If I want an able-bodied person to take my state seriously I can't just say "I'm a little tired today". Even if to MY chronic fatigue standards that really is just a little more tired than usual. MY "a little more tired than usual" doesn't look like what an able-bodied person understands as "a little more tired than usual" and it sure as hell doesn't require the same care as what they understand by it... But they're the ones with the power to concede or deny me the level of care or at least basic consideration I do need.
Same with pain. The things I consider to be ok regarding pain and discomfort are things an able-bodied person would call in sick for. Same too with the cognitive dysfunction when I'm flaring.
If we as individuals want to get anything from a little understanding to (God fucking forbid) tangible help for our impairments then we have to start articulating what we're going through in terms they could understand. It's why I tend to tell people to "exaggerate"; because most of the time we won't be exaggerating, we'll be more accurate than we otherwise would.
Don't articulate your impairments to able-bodied people based on the bullshit you're used to on a daily basis, articulate them in relation to what's gonna get you the help you need.
I saw these pain scales on another post on this topic. It was largely about why for us numerical scales usually do no good because we mentally recalibrate what we are used to as “normal” and then imagine something like getting shot or run over by a bus as a 10 and work down from that.
These have the number scale but also a level of activity/pain that goes along with it, which based on the responses to the other post none of us had ever seen before.
I have all 3 saved on my laptop, my ipad, and my phone so I have them handy most of the time.
Not to be dramatic but this is the first time I see that fatigue scale and I want to cry because I feel so validated, at best I'm usually at a 7.
I can't provide descriptions for the pictures right now because I'm at like an 8.5 in that fatigue scale but I would really appreciate it if anyone reading this could do it for the visually impaired users who might be trying to navigate this post.
























