Though most of us have experienced trouble swallowing some particularly disgusting dish during our lifetimes, for those with dysphagia—also known as a swallowing disorder—all food becomes nearly impossible to eat. At first, it may not seem like a death sentence; if meal replacers don't work, there's always a feeding tube, right? But people with severe swallowing disorders are locked out of any activity that involves eating or drinking, often meaning that their days of socialization are over.
"The social fabric has been pulled out from under us," says dysphagia sufferer Ed Steger. He hasn't had a real meal since 2006, when a surgical treatment for head and neck cancer left his muscles too impaired to swallow. Before then, he used to eat out about six times a month and travel internationally multiple times a year. Now, he might go to a restaurant four times a year—sitting with a plate of food in front of him that he can't physically eat. "I cannot eat socially or consume liquid socially," Steger says. Today, liquid makes up about 98 percent of his diet.
For something that affects an estimated 10 million Americans, swallowing disorders have gotten little attention. Even within the medical community, it's misunderstood. Those who suffer from it are often told by doctors that it's classified as a "rare disease," despite being more prevalent than peanut allergies (which affect about 3 million Americans). "For so much of the medical community—let alone the average person—to not know this doesn't feel right," says Steger.
Dr. Peter Belasky, the director of University of California, Davis' Voice and Swallowing Center, describes it as "a disability that's often worse than death itself."
Of course, there's a range of severity in swallowing disorders. The most common cause is acid reflux, which can temporarily inhibit swallowing in otherwise healthy people. There are others who suffer from swallowing disorders as a result of stroke, cancer, or other serious diseases. Therein lies the rub: when a swallowing disorder interferes with your life, it makes socialization draining, if not impossible. "People are avoiding these situations and they're not out there telling their story," Dr. Belasky says, adding, "The social consequences are devastating."
That was certainly the case for Karly Pickering, who has suffered from a swallowing disorder for a little over a year. "Some of my friends drifted away from me," she says, "but at the same time I chose to drift away from them too." Pickering may not have been a full-on foodie, but certainly loved to eat—especially foods from different global cultures. "Now," she tells me, "it's a struggle just to have liquids." The act of drinking requires her to go into a room by herself with no interruptions or outside noise. "I have to be as calm as possible and focused on what I'm doing," Pickering adds.
Her swallowing disorder had mysterious origins—beginning with something similar to a sore throat. Only it never went away, and eventually impacted her ability to eat altogether. At first, she tried to eat socially, but often had to leave because food would get stuck in her throat. Pickering says, "It was really scary and upsetting for me." Now the only socializing she does is within her own family.
Chris McKenna also avoids eating in public but more because he worries about what people are thinking. "You don't want to feel that people are talking about you," he says. Five years ago, he was strangled and lost his voice as a result. A few weeks later, he stopped being able to swallow solid foods. Doctors thought he had tonsillitis. "I used to get a hard time from my mum," he recalls. "She didn't understand why I kept spitting food out."
Rather than describe their condition to strangers every time they go on a date or meet a friend at a restaurant, those with swallowing disorders either withdraw or develop ways to fake being normal. Steger now orders a plate of food when he goes out to a restaurant. He says it makes his dining companions more comfortable and keeps the waiter from asking if he's "sure" he doesn't want to order something.
One of Dr. Belasky's patients often orders food only to chew it and spit it into a napkin. "By the end of the meal, she'd have a whole purse filled with chewed-up food," he says. To raise awareness for swallowing disorders, one of Dr. Belasky's colleagues attempted a Thanksgiving fast. Belasky sums up the result succinctly, "You want to piss off your mom? Don't eat her food on Thanksgiving."
So with regular food off the table, so to speak, how are people with swallowing disorders eating? According to Steger, his trips to the grocery store are quicker than ever—no more than five or ten minutes from the time he walks in the door to getting in the checkout line. He buys the same thing on each trip: the food replacer Boost, milk, and those nine-ounce bottles of cappuccino. It's forcing himself to eat that's difficult. "I have no appetite," Steger says. "There's no joy in eating."
As a physician practicing in California, Dr. Belasky has the option of prescribing medical marijuana to his patients to increase their appetites. It may be the only option available in the United States to make the thought of eating the exact same thing three times a day every day more exciting.
In Japan, food science for dysphagia is a bigger business. Their high rate of stroke has resulted in a similarly high rate of people with swallowing disorders. So they've developed things like food-flavored jellies to break up the monotony of eating. "They have jellies shaped and made to taste like sushi, edamame, miso soup, green tea … anything you can think of," Dr. Belasky says.
But if there's one thing people are willing to fight for, it's the hope that they'll regain the ability to eat. It isn't always possible for people with the most severe symptoms. For the others, its worth it to go through countless hours of physical therapy just to regain the ability to drink a glass of water.
"What we all take for granted and happens within several milliseconds is one of the most complex processes in the body," Dr. Belasky says.