On Slate.com today, Temple Grandin had some very interesting things to say about psychiatric diagnoses.
Now, she's living in a world of dealing with psychological disorders, many of whom may very well have neurological roots, and much of that does not have anything to do with the Neurological Highway that we MSers travel.
However, one word rises to the fore, and I think speaks very clearly to the MSer's challenges:
I'll let you draw your own parallels between Grandin's and your own experience in interacting with the medical profession, or the Medical-Industrialist Complex, depending again on your own experience.
But another thing Grandin speaks of is a patient's condition being "on a continuum." The patient's state is not a click-you're-one-disease-label, click-you're-a-different-disease-label, it's a continuum.
I saw this very thing (not label-lock, but "perception of continuum") at my last physical-therapy session. My therapist said that in many ways, I'm a spinal-damage patient, classic symptoms of someone who has had very traumatic spinal injury... except for the things that I can do. I've got next-to-no proprioception below the waist, I've got very poor control of my legs, especially my left leg--except, I can "temple" my feet around something the same way Montgomery Burns "temples" his fingers before he says "Excellent." Which a nastily-damaged-spine patient would probably be completely unable to do.
This perplexed my therapist. There are so many things that I can do, which given the number of things that I can't do, don't seem to make any sense. Both the "cans" and "can'ts" taken together do not create a nice, easy-to-deal-with, label-lockable situation. Oh yeah, certainly I can be rubber-stamped as "having M.S.", but what does that mean, in terms of what should we do about it?
Well, it's auto-immune-something. Or so they say... Misguided/misbehaving immune system. OK, fine. So now what to do we do? Trash the entire immune system? I don't think so. As Finn the Human (of Adventure Time fame) said to some creature who was threatening to drain his life energy, "My life energy? I need that!"
Then again, they may. Because in Grandin's own words, "This kind of thinking can do a lot of damage."
Well, we can't fix the medical profession or the Medical/Industrialist Complex. But we can fix ourselves. As the computer in War Games said...