Illness is illness, not a flaw in your personality or the result of a lifelong personal fascination with naughty substances. It’s more like a flaw in your genetic material mixed with an environmental trigger like the common cold or Epstein-Barr Virus. And although lifestyle definitely affects our health, we should be very careful not to take that awareness too far and blame the ill person for their malady. Not a big problem telling ourselves that. Easy-peasy commiserating about it with fellow MS patients. It’s ‘those others,’ the kind that like to turn your smile upside down and rough up the smooth edges you’ve taken so much time to file down so you don’t snag your delicates. Blamers, as you well know, amuse themselves by snagging our delicates. Seriously. It’s the main reason I stopped wearing panty hose.
The blame game
To be sure, the blame game didn’t start with multiple sclerosis. If anything, it is an inherited prejudice handed down from the mother of all diseases: cancer. Cancer is as old as the human race itself. Older, actually. Cancer has been found in primitive animal fossils from well before the dawn of hominins. But we don’t blame animals for developing cancer. And I think I’m pretty safe in guessing that animals don’t pass judgment on each other for having it either. While we congratulate ourselves for being the superior life forms that we are, let us remember that moral superiority grows out of ignorance and a lack of personal experience. So when we see someone who acts, looks, or professes to have pain, our first impulse is not empathy. We attack or we run. Or both.
Fear prevents us from naming the disease. As though labeling alone brings on suffering and death.
During a years-long fight with two different cancers, 20th century intellectual Susan Sontag wrote a book called ILLNESS AS METAPHOR. Though the focus of her writing is a discussion of cancer and the many social stigmas attached to it, we can relate a lot of it to our MS experience. For example, not so long ago, doctors did not disclose a cancer diagnosis to the patient, only to male family members. The condition was considered analogous to death, so it could only be uttered to a detached, ‘mature’ family member. Many patients went to their graves unaware they were even dying, let alone dying of cancer. What’s more, because not much was known about the disease, it retained an ominous mystique, and mysteries usually come with many myths and taboos. Even medical professionals were convinced that uttering the word ‘cancer’ hastened the patient’s death and made it somehow contagious. Anyone close to the patient was marked as a carrier and shunned by those outside the immediate family.
An echo of times past
Multiple sclerosis patients experience much of this today. I recently read through comments on an article I wrote concerning what people learned about their MS during the first 100 days after diagnosis. Many people complained that their doctors told them nothing about it. Some revealed that the doc told them they had “a demyelinating disease” with no mention of what kind. Some neurologists oppose the idea of educating patients about MS and discourage patients from educating themselves. It seems to be an echo of times past when the prevailing establishment thought revealing a diagnosis only made matters worse.
Turning back briefly to the point of ‘cancer’ being a label of demoralization and death, I’ll report my own experience with a breast lump last year. After a mammogram, my male gynecologist called me to come back in for a second breast scan. His reason was “because they didn’t get a clear picture of the right breast. This is just a do-over.” When I showed up for the appointment, the mammography tech showed me a scan and pointed out a growth they wanted to investigate further. After I picked up my jaw from the floor, I told her my doc said nothing about a growth. She told me a lot of doctors don’t know how to present that kind of information to a patient and simply avoid it all together. Mind you, this happened in 2016, not 1916. (It turned out to be a harmless cyst and was aspirated. I’m fine.)
An opportunity to de-mystify illness
Why do the words cancer and MS instill so much fear in us even now? Sontag thinks it is directly tied to our fear of death. We don’t deal with death at all, really. It’s scary because we don’t know much about it. But we know a lot more about diseases now than we did. That ought to be an opportunity to de-mystify illness and call it what it is—without using violent metaphors. Is it a monster, a demon, a death sentence, a war? Those labels suggest a violation from outside. But the data make clear that cancer is an overgrowth of our own cells and multiple sclerosis is our immune systems attacking our own tissues. It is a case of natural functioning kicking into overdrive.
If only we could leave scary folk tales for nighttime autumn camp fires, where kids eat s’mores and are only haunted by the dark.