What little I know about other MSers experience is simply this: we all experience it differently, and our relationship with our state is different. Those discussions clearly exemplified both of those.
I can only speak of my own struggles, and Lord knows, I don't offer myself as any sort of example of "doing it right" and certainly not as someone who's "doing it better." Here's what little I know about my own experience:
I constantly struggle against thinking about MS as an "it." It doesn't have separate existence from me. It is me--or, more precisely, the name I've given my current state. Even giving it a name gives it separateness. There is nothing about MS that is not, 100%, me. I find myself saying "The MS took my energy" or "The MS took my summer." But that's not possible; it doesn't exist.
Sometimes we get stuck on single moments. Something intense happens, and we don't fully experience it, we don't fully experience our reaction to it. We remain stuck in that moment in the past, and our present is colored by that moment until we deal with it, and fully release the charge on that moment. My initial reaction when I received The Diagnosis was—deflection. "Those white blotches aren't supposed to be there," I asked the neurologist as he showed me my MRI. "Those are the scleroses of which I have multiple." He nodded. And what passed for my "reaction" to the diagnosis was precisely these words: "Well, it was going to be something eventually, anyway."
I meet every disease-associated change with deflection. I laugh. "You can't write jokes like this." And really, on retrospection, it often is funny, in a strange way. Or I shrug it off. "Oh well," I say. "It's an inconvenience, not a tragedy." Often that's a reasonable assessment, quite fairly made in retrospect.
I don't meet anything head on. I don't face it. I defer it.
Let's at least face it now; let's call it what it is. Denial. And that is something that I definitely have to meet, whether I want to or not. Clearly, right now, I don't.
I will say that since The Diagnosis, I have changed in many positive ways. Looking back over my life, I changed in positive ways after many horrible, horrible experiences. Usually, the more horrible the experience, the more beautiful was the outcome that that very horror facilitated—created. (Amazingly Daoist, actually, the way these things have worked.)
Did I "need" to experience those horrors? Well, I certainly "needed" the gifts that those horrors mysteriously created. For example, did I "need" to get fired from my job in 1983? Maybe not, but somehow that life change pushed me into a master's program in music, which definitely changed my life vastly for the better (and which changes still reverberate in my life today). And, y'know, I don't really care if that's precisely how the universe works. It just seems to work that way for me, and that's good enough for me.
I'll be very happy when the glories that my current state creates begin to manifest.
But, I'm beginning to think as I type, I ain't gonna experience them until I fully experience my current state, and what I feel about it. And what I feel about The Diagnosis, and what I really felt at the moment of The Diagnosis.
And I have to be honest with you, I don't think I'm ready to deal with any of that.
Well, as Super Chicken often reminded his sidekick, "You knew the job was dangerous when you took it."