It’s Time to Change our Language Around Illness and Death

Credit: Cornell University College of Arts and Sciences

“To fear death, gentlemen, is no other than to think oneself wise when one is not, to think one knows what one does not know. No one knows whether death may not be the greatest of all blessings for a man, yet men fear it as if they knew that it is the greatest of evils.” ~Socrates

Recently I read a blog post titled, “On Dying, Mothers and Fighting for Your Ideas,” which had been recommended to me by a friend. Written in 2012 by Jon Morrow, the CEO of Smart Blogger, it’s a story about a mom who refused to give up on her child. At first, it seemed inspiring, and on a certain level it definitely is.

At the age of 1 year, Jon was diagnosed with spinal muscular atrophy (SMA) Type 1, a form of muscular dystrophy that typically causes death before the age of 2. The doctor told Jon’s mother that her child would become progressively weaker, eventually losing the ability to move or even breathe on his own. When that happened, the doctor explained, Jon would face repeated episodes of pneumonia, which would sooner or later cause his death.

But Jon’s mother refused to accept that prognosis. Instead (as Jon tells the story) through sheer will and determination, she kept her child alive through 16 bouts of pneumonia over the ensuing 16 years. She stayed by his side during hospitalization after hospitalization, tirelessly advocating for him and administering the chest physiotherapy that helped him cough up the thick secretions that he didn’t have the strength to mobilize himself. And as Jon grew older and stronger, she advocated for him in many other ways, refusing to treat her other-abled child as a victim, and pushing him to succeed.

Jon wrote the aforementioned blog post at the age of 27. He is still alive and a successful writer and business owner today. He credits his mother’s self-sacrifice, determination and love for the fact that he is now one of the oldest people in the United States living with spinal muscular atrophy. He writes:

“Some mothers are weak, sure, but the vast majority fight for their children, especially when those children are defenseless. It’s not because they’re trying to be heroes. It’s because that’s their job.”

An inspiring story? Certainly. But for someone like me, who has had a little experience with spinal muscular atrophy, it was quite disturbing, too. Because I’ve seen a few kids with SMA Type I (also called Werdnig-Hoffmann disease) — three of them from the same family, in fact. And they all died before their second birthdays, after being tethered to ventilators and stomach tubes and IVs for months. But they didn’t die because their mothers didn’t love them. They didn’t die because their mother’s didn’t fight hard enough. And they didn’t die because doctors didn’t do everything humanly possible to help. They died because they had a horrible illness, and people with horrible illnesses, sooner or later, die.

It’s Not a War

Americans love war metaphors, especially when we start talking about illness and death. People “battle” cancer, and “struggle with” heart disease,and “fight” to stay alive. When someone dies after a long illness, we say they “lost their battle” with such and such, rather than simply stating the fact and manner of their death. These euphemisms have become so common, in fact, that we rarely, if ever, question them or wonder what message they send to someone whose “battle” with a deadly disease is coming to its inevitable end. Are they losers? Are they weak? Are they “less than” in our eyes because their heart or lungs or immune systems are succumbing to an “enemy” they can no longer fight? If a child dies from cancer or some rare genetic disease, is it because his parents didn’t love him enough or because they didn’t fight hard enough on his behalf?

Battle metaphors are emblematic of our society’s twisted attitude towards illness and death. For decades, doctors have referred to the medicines and therapies they use to treat illness as their “armamentarium,” a word derived directly from the word “armament,” meaning a military force. In the medicalized view of health and wellness, illness is the enemy, and death is the ultimate failure. Is it any wonder that so many people and so many caregivers are burdened with guilt, regret, and an enormous sense of failure when death finally comes to pass?

When we label death as “the enemy,” we limit a dying person’s ability to make friends with the inevitable and greet it on peaceful terms. We turn a natural event into a war that a person who is  dying can’t possibly win. And we do irreparable damage to our own ability to accept the fact that aging, frailty, illness and death happen to us all.

It’s Time for New Language

Now, I completely understand that Jon Morrow was paying tribute to his mother’s strength and courage and example when he wrote his piece. And I get that his message makes sense in many ways — accepting defeat too easily is not a path to a successful life. But at the same time, the words we use matter, especially in the lexicon of illness and death. We need to develop language that honors the mental and physical anguish of those living with a serious illness without turning their lives into a metaphorical battlefield.

Perhaps we could go back to a time — not that long ago, really — when we simply said someone was ill or someone died. Saying that a person “has cancer” or is “living with cancer” is appropriately descriptive without being judgemental in any way. Or perhaps we could honor the journey — focus on the life that is coming to an end rather than how that end is coming about.

Whatever we do, I think we can all agree that no one should face the end of their lives feeling as if they have failed. And no mother should be labeled “weak” because her child succumbed to an illness caused by a misplaced gene on a strand of DNA. 

About Kathleen

Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York. After relocating to California, she spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her knowledge and expertise to enlighten our readers about the challenges associated with chronic illness and its effects on family relationships.