Updated November, 2016 – 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.
Some May Never ‘Get It’
For those who develop food allergies or celiac disease as adults, the process of health education can be particularly problematic, since family members have often seen the person eat the food in question all their lives – so no matter how much explaining is done, it just doesn’t seem to sink in.
Traci Cottingham’s husband did all the right things when he organized a 40th birthday celebration for his wife, who has celiac disease. He ordered a gluten-free cake, bought gluten-free foods, and asked family to bring some gluten-free items for a potluck. When she arrived, Cottingham was told she could eat anything she wanted – a rare and delightful treat.
But the next day, she was doubled over in pain. After a little detective work, Cottingham discovered that her own mother had been too busy to make safe meatballs, and instead had picked up a box from the local grocery store.
“I get that it’s time-consuming, but at least warn me that they have gluten,” says Cottingham. She was so exasperated by the experience that she didn’t speak with her mother for weeks, and took a pass on the invitation for Thanksgiving that year. Things are smoother now, but Cottingham adds, “I still don’t trust her cooking.”
Don’t Take the Bait
But Do Communicate
When people feel they’re being ignored, and their health is being put at risk, emotions are bound to flare. But while many of us who live with allergies or celiac disease may have Vulcan-like calm while explaining food allergies or a gluten-free diet to a waiter or a teacher, we’re only one relative’s eye roll away from bursting into tears where family is concerned. So why do relatives push our buttons and make us react in a way we never do with friends or acquaintances?
Parenting coach and Parenting Network founder Beverley Cathcart-Ross says it has a lot to do with family dynamics. She explains that, as children, we typically fall into certain roles within the family – the exaggerator, the drama queen, the doormat, the flighty one – and our concerns are seen through that filter by other family members. Then mix that unresolved baggage with a stressful situation like a holiday gathering, and those pre-determined roles will affect how you react to your family members and, more significantly, how they react to you.
Cathcart-Ross says it’s important not take the bait, and instead step out of those roles and begin genuinely communicating. “Start behaving more self-respectfully within your family dynamic and slowly your family dynamic will change,” she says. “Because when one person changes, that person’s relationship with all the other family members changes.”
Thirty-five-year-old Rebecca Fishner from Park Ridge, New Jersey took this tack and it worked beautifully. When she was first diagnosed with multiple food allergies, she only ate food she or her mother had cooked – and that made her miserable, especially in social family gatherings. No matter how spectacular the food was that she brought, she was still eating it out of a container.
She understood that it took extra effort for relatives to cook safe food but, for her own self-respect, she decided to stop attending family functions until they tried to cook at least a few things she could eat. It took time and a few missed social events, but eventually it worked. “There are few things that feel as good as being able to really be a part of celebrating with your friends and family,” she says. “And I love them for it.”
Finding ‘Dual Respect’
Cathart-Ross calls this is an example of “dual respect” – that is, treating both your relatives and yourself with respect, instead of waiting for your family to do it.
“Dual respect is different from mutual respect. The flaw in mutual respect is you have no control over whether the other person will respect you back,” she says. “If you’re trying to treat your relatives with respect but they are not respecting your condition, it’s time for a change in approach.”
Of course, asking for that respect can sometimes be met with resistance. Trudy Lamontagne’s large extended family has many social gatherings, but when her son was first diagnosed with peanut and egg allergies at 15 months, the potluck food became a problem. Lamontagne tried to explain the dangers of cross-contamination and accidental ingestion to her older aunts and uncles, but no matter how delicately she broached the issue, they always seemed resistant.
Things came to a head after Lamontagne offered to make all of the desserts for a Father’s Day potluck – she was concerned that, with food coming from eight or 10 different kitchens, the risk was just too high. One of the aunts was offended that Lamontagne didn’t trust her cooking. Several family members took the aunt’s side.
“I was accused of trying to keep my son in a bubble. It was so much more personal because it was family. I expected a level of understanding and, when I didn’t get that, it made me feel like an outcast.”
Like many people in the same boat, Lamontagne stopped going to family gatherings for a while – and Cathcart-Ross says that’s not necessarily a bad idea when family members aren’t respecting health needs, or if the risk is simply too great.
“This is what we call the lesser of two evils – not your first wish, but better than the option of you or your child’s safety being at risk,” she says.
When to Avoid and
Not to Avoid Events
But just not showing up isn’t the answer: Cathcart-Ross adds that people living with allergies or celiac disease must calmly, carefully and directly explain why they’re not coming to Uncle Bob’s birthday party or their cousin’s graduation celebration. “How you communicate this to family is vital. A caring attitude is always helpful.”
It’s also important to not avoid events unnecessarily. Dr. Shemesh says it may be unreasonable to expect a relative’s home to be allergen- or gluten-free, but so long as exposure to dangerous foods does not happen, there is no harm in visiting. He adds that, especially when it comes to allergic kids, avoiding things that are safe along with those that aren’t can blur the line between what is allowed and what is not – and this leads to anxiety instead of confidence for all involved.
“There are healthy ways to avoid allergens, but sometimes we can become far too restrictive – avoiding more than we need to,” says Shemesh. “This can lead to a behavior pattern called ‘avoidance coping.’”
It took four years, but Lamontagne finally explained to her aunt that she wasn’t a control freak about her son’s allergy, but was driven by the fear of losing him. A milestone event she couldn’t miss – her grandparents’ 65th anniversary – eventually brought her back in touch with her relatives, and when one of Lamontagne’s aunts asked if she could give her son a peanut-free Popsicle, she felt they finally, truly got it.
“I cried it was such a breakthrough,” she remembers. “It’s hard to describe because they didn’t get it for so long. All they needed to do was realize they can put my fears to rest by reading and keeping labels.”
Are You Communicating
Food Issues Clearly?
After the dust settled, Lamontagne realized that she and her relatives had never actually sat down and compared expectations – and the experts say that in these situations, clear, effective communication is the key. Gina Clowes is the founder of Allergymoms.com and a certified master life coach who counsels allergic families.
In her view, allergic adults, or parents of allergic kids need to be very clear about what they need – and they must set aside time to make that happen rather than trying to get the message across in the heat of the moment.
“In dealing with this potentially life and death illness, many people have not scheduled that meeting to actually sit down and talk with relatives. This can’t be done on the fly,” says Clowes. “Allergic adults and parents of kids with food allergy or celiac disease tend to be fact finders, they have hundreds of hours of education on this – but they haven’t even shared a solid hour with relatives.”
Clowes finds it’s also important to remember that while people with food allergies see everything through allergy-colored lenses, their relatives don’t – so it’s easy for them to forget about allergies at busy family functions. “We break bread together; that’s how people connect,” she says. “We just have a very different experience with food that’s dangerous to us.”
Different cultural backgrounds and beliefs can also play a role. Not long ago, Michael Furzeland spent five hours in hospital getting his asthma under control after he walked into his house to find his girlfriend, who is Filipino, cooking fish – a food he is severely allergic to.
Fish is a staple in her culture, and while she acknowledges Furzeland’s allergy, she doesn’t grasp its severity. “I think ethnic differences are sometimes part of the problem,” says Furzeland, who lives in Jasper, Alberta. “She thinks that I don’t like fish – not that I’m allergic to it and must avoid it for my health.”
One Italian-American couple said they struggled with grandparents who offered allergen-laced food to their young kids; but the father found a smart way of presenting the issue – by drawing a parallel between the food allergy and the grandfather’s diabetes. The grandmother was already very careful to avoid sugar because it could be harmful, and when the son asked if Papa was “allergic” to sugar, the light bulb went on and the problem was fixed.
“Some of the problem with communication can be cultural,” agrees Laurie Harada, executive director of Food Allergy Canada. “Relatives who have emigrated from other countries may have never come across food allergies before.” Besides cultural differences, there is a generation gap since the fast rise of allergies is a recent phenomenon.
Rachel O’Neill’s mother-in-law is in her 70s and O’Neill concedes that, “it was uncommon in her day to be allergic to nuts, let alone any foods.”
In the end, there is no magic cure that will work for every family because complex problems cannot be solved with simple solutions – and, as they say, you don’t choose your family. But clear and calm communication is vital, as is the ability for those living with allergies to put themselves in their relatives’ shoes. Harada suggests one way to do this is to pick three allergens that are not the ones you usually deal with. Now just think about the level of concentration and focus that’s required when it comes to preparing food.
“I think we have to appreciate the stress people feel when preparing food for folks with allergies,” says Harada. “Because if people don’t have to live with this, they’re not going to automatically retain the information or think about things the way that we would, but that’s sometimes the expectation we have.
“It takes a while for us to get it, and it takes a while for others to get it as well,” she says. When it comes to the learning curve and the family curveballs, “I think what we need to be is patient.”
*Asterisk denotes name change for privacy.
First published in Allergic Living magazine. To get Allergic Living delivered right to your door, click here.