What We Should Expect of Ourselves and Others

One big gripe that dominates MS forums is that non-MS members of the human race look at us and see health. We seethe at their cheery evaluations of our appearance. You look so good.You don’t look sick. Why does it make us want to spit nails?

Before MS, we reveled in such compliments. Back then, our outsides matched our insides. If we caught a bad cold, it made us look and sound as bad as we felt. The immune system attacks a cold virus on the inside and the purge results in excess mucus, sneezing, and a scratchy voice, quite a sickly sight. People observed us and voiced their sympathy and well-wishes.

But MS isn’t quite the attention hound a cold virus can be. It’s more like a seasoned abuser that only batters its victims in places the public can’t see. The wounds can heal and scar over, but ongoing battering can cause serious, permanent damage. A cold is neither serious nor permanent; it evokes more sympathy because it is instantly relatable. Everybody gets one sooner or later. Everybody also knows it won’t last beyond ten days and the sufferer will enjoy a full recovery. So, when news of Dorothy catching cold makes its rounds, people don’t set up a fund to pay her doctor bills.

Multiple sclerosis changes how we think of and experience illness.

We want others to change along with us, to keep up with what has happened to us as though it is also happening to them.

It’s hard to grasp the idea that MS requires understanding modern warfare more than learning about rare diseases. When we are children we line up our toy soldiers in horizontal formations and rush the enemy head on. Multiple sclerosis doesn’t fight with such classical strategies. It’s more like guerrilla tactics employed in the jungles of Viet Nam. Or an underground resistance fought by a largely unseen group of rebels. Neurological disease is invisible because the battlefield is within us, deeper than skin level.

This fact can give us an advantage. If we’re still working, for example, the fact that most RRMS symptoms are invisible might allow us to conceal our condition from our employers. It could mean the difference between staying employed for many years to come--or battling the stressful fallout of job loss.

Of course there are disadvantages, too. A normal-looking person with MS could have significant cognitive dysfunction that a stranger might not pick up on until five or so minutes into a grocery store conversation, an interview, or a social gathering. Or not. There’s no way to know how things will shake out. We can become timid and defensive, feeling internal pressure to either directly explain ourselves or employ diversionary tactics. Which one is the best strategy? There are no generals barking orders at us in this war. We’re on our own.

Although there are no easy answers to these situations, there is a base on which we can build.

It starts with expectations.

  1. We can first acknowledge our wish that people would see our suffering and respond to it like they would a bad cold.
  2. Then we can step back and take a more distant perspective, admitting to ourselves that people don’t have RADAR or X-ray vision, can’t see past our skin--and shouldn’t be expected to.
  3. Finally, we can remember who we were pre-MS and own the fact that we were also self-absorbed judgmental healthy people who never gave a second thought to the world of disability and didn’t really want to.

After we’ve done all that and gotten our heads screwed on straight about what not to expect of others—and if you’ve really done a thorough job of it, the list should be a long one--what then?

Make a list of what we should expect and of whom:

  1. Doctors—It’s entirely reasonable to expect a medical professional to thoroughly examine and test us during both the diagnostic process and follow-up care. We should expect them to listen while we recite our symptoms, old and new, and our reactions to medications. And we can expect to receive test results and explanations made clear.
  2. Family and friends—This is a little harder. While it’s certainly justifiable that we would expect understanding, support and compassion from loved ones, we won’t always get it.
  3. Ourselves—If we’ve done a thorough job of it, this list should be the longest one of all! It's on us to educate, communicate, exercise monumental patience and understanding. If we build on our life experience, in time we will become wise old sages--or like the Farmers Insurance agent in the commercial who says: We know a thing or two because we've seen a thing or two.

It is the last item that should occupy our thoughts the most. Time and again we advise each other that it is vital that we become our own bulldog advocate, sharpen our communication skills and get aggressively involved in our health care.

Expectations start at home plate. When it’s our turn at bat, we must pay attention to the signals and decide whether to swing away or dig in our cleats and wait for a better pitch. And let’s not expect ourselves to make flawless decisions every time—or expect anyone else to, either.

We’re all doing the best we can.

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