LILY Becker* will never forget the day her brother-in-law slipped a peanut butter cookie to her allergic young son when she wasn’t looking. Becker’s Waconia, Minnesota home was packed with relatives watching the big game on TV, and the mood was festive – until her son came up to her in the kitchen and said, “I feel sick.” Becker’s sister-in-law rushed in to admit that her husband had given the boy a peanut butter cookie. Moments later, the 2-year-old began vomiting repeatedly.
In retrospect, Becker knows the reaction could have been far worse, and she’s thankful it wasn’t. Still, she wonders whether her in-laws were actually checking to see if her child’s allergy was real. “To this day, I believe he gave it to him to test whether I was making the whole allergy up,” she says, adding that after the incident, the in-laws took the allergy far more seriously.
“It was strange, because I now had ‘proof’ of my son’s allergy, so I felt more comfortable making special requests and inquiring about ingredients.”
For 14 years, Rachel O’Neill* has tried to get her mother-in-law to understand. O’Neill, who lives in Ottawa, Canada has explained again and again that her allergies to tree nuts and peanuts are a serious condition that could land her in the hospital – or worse – and that her oral allergies to carrots and celery are not the product of pickiness. Still, when she and her husband visit, O’Neill’s mother-in-law continues to dish out foods she’s allergic to, then remembers out loud that her daughter-in-law doesn’t “like” them.
O’Neill’s husband always speaks up about his wife’s allergies, and for the most part, his mother seems sympathetic enough – until it’s mealtime. “The most frustrating part is that the sympathy is there, but the follow-through is not,” explains O’Neill. “I find it exhausting that I constantly have to ask whether the food being served has nuts in it – then still can’t trust that the answers are legit.”
In Pickering, Ontario, another family was shocked to discover the source of their young son’s frequent bouts of illness was his own grandparents. In the dangerously misguided belief they were building up his tolerance, the paternal grandparents had been secretly grinding almonds into his cereal behind his parents’ backs, and it was making the child sick.
Amazingly, stories like these are not at all uncommon. Every day, adults and kids are diagnosed with food allergies or celiac disease, and they naturally expect that the people closest to them will take the most care – as they would with any serious health condition. After all, you should be able to trust your mom to keep gluten out of her gravy, and assume that, when your brother babysits your peanut-allergic daughter, he carefully reads the ingredients on that chocolate bar, right?
For too many living with food allergies and celiac disease, sadly the answer is no. In the fall of 2010, Allergic Living sent out a request for anecdotes of family experiences (both good and bad), and within days we were inundated with responses – dozens of stories about grandparents, parents, uncles, aunts, sisters, brothers and in-laws denying and ignoring their allergies, disputing them, and worse, triggering reactions that could be life-threatening.
A disturbing number told stories of disbelieving family members actually “testing” allergies or gluten intolerance by slipping the offending food into their or their children’s meals.
Not surprisingly, those telling the anecdotes feel hurt, upset and betrayed as close family relationships descend into pitched family battles. Sometimes full-fledged wars break out as communication melts down and both sides storm off in opposite directions. Along the way, many are left to ask, “Why doesn’t my family get my food restrictions?”
Some Only Believe It When They See It
A big part of the problem is the invisibility factor: people with food allergies look perfectly healthy, notes Dr. Eyal Shemesh, an associate professor of pediatrics and psychiatry at Mount Sinai School of Medicine.
“On the one hand it’s a real thing, it could be life-threatening and it has to be accompanied by a significant change in lifestyle,” explains Shemesh, who works with families of kids with food allergies. “But on the other hand – and this is where it’s different from cancer or a major operation, for example – it’s not apparent.”
It seems that Marion Rosen’s family really needed to see in order to believe. Rosen has a serious peanut allergy, and while her husband has always been diligent about keeping her and the potent legumes apart, her mother-in-law wasn’t nearly as careful. One day, Rosen was at a family celebration, and she bit into a cookie that her mother-in-law said was safe. Within minutes, she began experiencing one of the most serious reactions of her life, and was rushed to hospital.
When she was sent home several hours later, the doctors told her that, because of all the allergy medication she had received, she could not safely nurse her baby for 48 hours. The baby, however, refused feeding by bottle – then struggled to swallow the small amounts of solid food he was given, because he was not yet ready for the switch to solids.
After witnessing the reaction and its repercussions, Rosen’s mother-in-law has finally come to appreciate the seriousness of the condition. “Unfortunately I still believe that had she not witnessed that reaction, she would still not be taking the allergy ‘thing’ very seriously,” says Rosen, who grew up in Toronto and today lives in Israel. “But this is not a method of education that I would particularly recommend.”
Fortunately for those with allergies, their relatives don’t always get to witness a full-blown reaction. Yet a common thread in the stories readers sent to Allergic Living is that relatives who hadn’t seen the effects firsthand often presumed the allergic person or parent was overreacting, neurotic or a control freak when describing the seriousness of this condition.
*Name changed by request
Next: Keeping Emotions at Bay