We know the neurological meanings of MS. We know for some people, those that begin with a progressive form of the disease, there is an awareness at the outset that things will get worse. For others, with a relapsing-remitting course, things could get worse progressively at some point in time or symptom flare-ups could occur, echoing already-experienced symptoms or brand new ones, and these "problems" could either eventually go away entirely or abate to a point where they are always hovering and noticeable, and potentially be new matters to accommodate to, but not necessarily in a flagrantly interfering kind of way.
We know that there are disease-modifying medications that, when taken as prescribed, have some chance of preventing disease progression but none of these are seen as cures. Meaning, even on these meds, one's MS can progress. Essentially then, you take the meds because it's what's available and advisable, but to be fair, it's truly a crap shoot if any of these medications do what they are purported to do. It's better than doing nothing, most neurologists would agree. And taking a supported, approved medication can be seen as a proactive act of self-care. Does that or can that idea inspire confidence when disease progression is still possible even when on any of the available medication therapies?
What I find to be the number one issue that makes MS intolerable, rendering the most anger, fear and resentment, is its very high level of unpredictability. While all of us live with massive amounts of unknowns everyday, we find ways to tolerate that notion by various forms of defense, most likely via the one called "dissociation in the service of the ego." Simply put, this defense functions by slicing out much of the stimuli and information that comes at us constantly from all directions, because we couldn't begin to have the capacity to process the amount of data hitting us at any given time. We have to shut a great deal out of our consciousness in order to function and do what we need to do; otherwise we'd be objects of constant distraction and confusion as to what to pay attention to or not.
What occupies the minds of most people with MS if you ask them, is the matter of how their disease will progress. And it’s not an "if," but a certainty of "how," even if no progressive certainty was ever communicated, postulated, or assumed by anyone. Probably having been told that their respective MS has the likelihood of progressing (as is communicated by many doctors based on many data points in consideration, even if the chance is considered very slight), the "likely" in my experience with the patients I see, almost automatically mutates in their respective heads into a "definitely," and all sorts of despairing MS scenarios ensue: as imaginings of a future filled with certain debilitating demise, even though part of the unpredictability of the disease is that it MIGHT NOT CHANGE AT ALL from the time of initial diagnosis.
As in the general population, worrying about something in the future is often viewed as a way to control the emotional reaction to what eventually does or might come, and even thought to have powers to control the event itself. And many of those with MS spend a great deal of time and energy focusing on and imagining the worst for their respective MS course as a way to prepare for, control, and even avoid "the worst" from happening. As if worrying in and of itself bears such power for any of us!
None of us know what will happen in our future. Sure, we can pay attention to what’s in front of us, make conscious decisions using the information we have at the time, but prognosticating...that we can't do. And even if we could, what would we focus on? So much stimuli, not enough time, too many things to do in a given day. In other words, it's very problematic, and I think impossible to be or to feel the need to be constantly vigilant of every possible eventuality that may come our way, good or bad. There's just no way to do it without becoming utterly immobilized. My opinion.
By focusing so much on what could be, we are missing out on what is happening now, and; in worrying or anticipating or predicting what will happen to us next, we are both presuming that our conscious focus will somehow give is control over what's to come (it does not), besides the fact that we are expending a tremendous amount of energy prognosticating about what will be. When the truth is, for all of us, MS or not, WE DO NOT KNOW WHAT WILL BE!!
We know life carries much uncertainty. That can be scary and mentally flattening if we consume ourselves with that notion. What we can do is find ways to empower ourselves with the knowns we have awareness of and make constructive decisions about those things...thus allowing us to feel less in the unknown dark.
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