Sharon Rosen craves food as much as the next person. And with the holiday eating season upon us, it’s impossible for her not to think about turkey and ham and mashed potatoes and pie and all those fancy hors d'oeuvres that have become synonymous with the season’s celebrations.
But while the rest of us are making the rounds to holiday dinners and cocktail parties, Sharon will remain at home. While we’re feasting and fretting about inevitable holiday weight gain, she’ll be nursing her spinach-laced protein shakes and nibbling on rice and crackers, hoping to take in enough nourishment to keep ninety-two pounds on her five-foot-three frame. Because as much as she desperately wants it, food makes her sick. So like an alcoholic trying to steer clear of liquor, she avoids any social gathering where food will be present, even when it means missing out on the first Thanksgiving with her parents and brother since moving back to her hometown of Tampa a few months ago.
“Right now the plan is for them to stop by my house before and after their meal,” Sharon told me recently. “I know I should be able to go over there and just enjoy the time with them. But I can't handle being in a house that has had food cooking in it all day—food that I can't eat. The smell would drive me insane.”
Sharon suffers from Gastroparesis (GP), a debilitating condition in which her stomach muscles have stopped producing the contractions necessary to digest food. On top of that, she has extreme corn allergies that render her intolerant to any corn additives, making an already miserable condition nearly impossible to manage.
Now thirty-seven, Sharon’s nightmare with food started three years ago when an injection at a dermatologist’s office triggered a severe allergic reaction that caused her body to break out into hives. The hives turned into sores that Sharon says made her look like a leper. Doctors didn’t have an answer. One even suggested she do better job moisturizing. Desperate to figure out what was wrong with her, she and her husband, Dave, began keeping a food journal and examining every ingredient that she took into her body. They eventually discovered that corn additives—found in virtually every processed food as well as cosmetics and medications—were to blame. For whatever reason, the injection, which contained a corn byproduct, tipped the balance in Sharon’s body and caused an adult onset of the allergy.
Sharon took the challenge head on, revamping her diet, starting a live corn-free blog—even petitioning the FDA to include corn in food allergen labeling. She and Dave eliminated corn products from their kitchen, began eating whole foods and were back on track.
Then, in January of 2011, Sharon contracted a severe flu that wouldn’t go away. Eating even small amounts of food made her nauseous and she watched in horror as her weight plummeted from a healthy 110 pounds to a frightening 84 pounds.
“Along with feeling miserable, I looked like a prisoner of war and became scared of going out in public,” Sharon remembers. ”I didn’t want people to judge me and think I was doing this to myself—when all I wanted to do was eat.”
Sharon thought she was dealing with a lingering flu bug. So when the doctor who diagnosed her told her that the flu virus had caused nerve damage that was responsible for the condition that was now going to be a regular part of her life, it was almost more than she could bear.
Sharon says she cried when the doctor delivered the news. “She told me that I would need to prepare any food I eat by blending it first. By this point I was only able to intake about 300 calories a day and I had been craving food—all different types and flavors—for months. The thought of blended baby foods being the only thing I could eat seemed over and above what I could handle.”
Since her diagnosis, Sharon has been forced to approach life a meal at a time. Her biggest concern is keeping enough weight on her body so that she doesn’t have to resort to a hospital feeding tube. She occasionally takes Domperidone, a medication that she purchases through Canada because it’s not approved in the U.S., to jumpstart her stomach—though she says it doesn’t do much to stave off the nausea and other symptoms caused by GP. Dave has become her lifesaver, helping her to steer clear of corn products while making the blended shakes and soft, mushy meals that her stomach can eventually digest. Sharon limits her intake to a three-quarters cup of soft food at a time. But even that small amount can make her feel stuffed and bloated. Sometimes after eating she feels sleepy, a sign she has eaten too much. Other times, eating makes her cold and requires a heating pad on her stomach. She often fights intense hunger pains only an hour after eating because she’s been unable to take in enough food to sustain herself. Yet her stomach is still stuffed and bloated because it hasn’t been able to digest the small amount she’s put in it. Then there’s the severe nausea that can kick in at any given time.
Sharon is lucky in that she is self-employed and works from home. Since she never knows how she will react to food, eating has become a private affair for her—something she feels comfortable doing only in front of her husband.
“I just read a book about living with GP and the woman talks about not holing yourself up in your home. But I just haven’t figured out how to navigate a social situation. When food makes you sick, you become scared to it eat it, and dealing with it in a social setting is too much for me.”
Sharon admits that depression sometimes gets the best of her. But though it’s rare, she knows that recovery is possible for some GP patients and she’s determined to become one of them. She’s discovered that acupuncture helps her nausea and she focuses on managing her stress, which she says is crucial with GP. She has also started taking walks with Dave during the short window between when her fullness has subsided and the hunger pains haven’t yet kicked in. Her dream is to get well enough to spend a day at Disney World with Dave, a carefree day where she doesn’t have to worry about what she eats or the associated consequences.
Though the challenge of navigating her illness is heightened during the holidays, Sharon says she tries to take it in stride and has become adept at quickly skimming over the savory food images that seem to take over social networks between Halloween and New Year’s. She refuses to begrudge anyone because they get to enjoy the seasonal feasts and socialization that she currently can’t. She says the one thing her health struggle has taught her is the need for compassion, understanding and acceptance—a take away we could all use during the holiday season and throughout the year.
“I try not to judge anyone because the one thing I’ve learned from all of this is that every person you come into contact with during the day either has something tough they are dealing with in their lives or has someone close to them who is—even if you can’t tell by looking at them.
“When I think about it, I realize I have it quite good,” Sharon adds. “I CAN eat. Not always what I want, when I want, or even where—but I can. And not everyone can say that. I am very grateful for that.”