What Multiple Sclerosis Looks Like

Try to imagine what disease looks like. Any disease. Diabetes, for example. When you hear the word, what do you envision? An amputee? A morbidly obese person? Or your own father?

When people hear the words multiple sclerosis, what do you suppose they conjure? A person in a wheelchair? A bedridden, helpless somebody? Or Montel Williams’ ripped physique?

Which examples are accurate? You already know the answer. All of them. 

You also know that the premise is wrong. It’s not about what disease looks like. It’s about what disease feels like. Or, it ought to be.

Judging a book by the cover

But why isn’t it? Why do we place so much emphasis on what people look like? Should we blame the invention of portrait painting, photography, cinema, television, digital media? Hardly. People have been judging the book by its proverbial cover since before books were invented. Before the pyramids were built. Even Yahweh couldn’t avoid jumping to conclusions after creating heaven and earth. Still riding a creative high, Jehovah recklessly made Adam and Eve, and in a fit of narcissism, decided they were functioning optimally since they were made in the diety’s image. You can understand the reasoning given there was nobody else around to challenge the view that this was the best of all possible worlds just because it looked like it was. But looks aren’t always deceiving.

Looks aren't always deceiving

Our ancient ancestors used sharp eyesight to spot prey, a water source.They saw who belonged to the tribe, who might be lying, and which children were theirs. They judged the physical robustness of a person’s appearance and determined whether they would be a burden or an asset to the group that day. Then medicine came along and threw an arrow head into the works.

Before medicine, in Renaissance Europe, people succumbed in droves to plague, drought, and famine. People witnessed the ravages of disease in all its horrific eruptions. They knew what death looked like. Pustules and bleeding eyes meant plague and agonizing death within days. Five hundred years would pass before pathology and treatments were discovered and embraced, extending the human life span and easing suffering. But the bulk of these advancements largely improved acute illness and injury. Let’s return to a chronic dilemma: the dilemma that chronic disease can cause.

Acute injuries vs. chronic illness

Compare an acute injury such as a compound fracture with a chronic illness such as multiple sclerosis. The broken limb is sometimes visible, sometimes not. But the effect is unmistakable. The victim bellows in pain and cannot use the limb. Before anesthesia and penicillin, setting the bone was excruciating for the patient, difficult for the bonesetter and came with a high risk of infection. Nowadays it’s a cinch to fix. After six weeks or so, it’s healed and life returns to normal. Not so with chronic disease.

MS symptoms are confusing

Multiple sclerosis symptoms are comparatively perplexing. Not only does its initial presentation cause confusion, its ongoing symptoms often betray the patient, in public and in private. The astonishing truth is that the typical MS patient has no physical signs of disease and uses no mobility aids. In a culture obsessed with physical image, possessing a robust appearance can be an advantage in both work place and personal life. The appearance of health suggests integrity, reliability, strength and competence. The patient needs a job and wants life to go smoothly. Having the confidence of others greases the wheels of daily life. It proves that one belongs. Appearance offers the same impressions in friendships, romances and family relationships. Patients are embraced provided they behave predictably, normally. The patient can pretend and hide to a great extent, but suffering will eventually betray them. Then the trouble starts.

Coping with cynicism

Cynical reactions to the complaints of a seemingly healthy person are alarmingly pervasive. The why behind the cynicism is bewildering and hurtful. We all are conditioned to fit into the tribe. To do that we must look and behave in certain ways. Illness is okay providing it is a particular thing to which everyone can relate. A cold. The flu. Mononucleosis. Strep throat. Think of how many of your coworkers complain of those things. Viral and bacterial infections are tolerated because they are so common. But rare diseases are not. Nobody knows anything about them. Or perhaps they’ve heard something or know somebody who knows somebody with it, something like MS, a figure using a wheelchair or metal crutches. But whatever visual they’ve affixed to their reasoning minds and whatever sympathetic urge might spark, the tribal voice chafes at reason and sympathy, lashing out at the odd puzzle piece that doesn’t fit the picture of which they are a part. You can’t be serious. Don’t people die of MS? Have to be fed through a tube? You don’t fit that vision at all. You look like me and I’m not suffering from any disease. You must be lying.

We all do it. We judge. I know I do. Consider how many situations we encounter where we have to take somebody’s word for it, whatever it is. An accusation of sexual harassment, for example. With whom do you automatically empathize? Nobody is objective.

Fear and ignorance

The diagnostic process of multiple sclerosis is one of exclusion. So too the dilemma of chronic disease. The ill person is pushed out of work and relationships and cannoned into the labyrinth of managed care. There is no solution, no fix. Social science can study the bigotry against illnesses. Patients can read Susan Sontag’s ILLNESS AS METAPHOR and intellectually unpack it along with her. In the end, it leads us to the same forces that drive racial and gender bias: Fear and ignorance.

Fear and ignorance wear a mean look on the face. It makes us feel that we don’t belong. When will I see you mean I accept you? As the cultural zeitgeist, never. We need to find the kind souls of the world and latch onto them. They are out there somewhere. Always.