11 Things People With Severe Allergies Want You To Know

meredith.spear
meredith.spear

Peanuts, tree nuts, shellfish, insect stings – my past and present allergies to all of these things have made up a significant part of my identity ever since I can remember. I once went away to camp, and nobody even knew my real name; I was just referred to as ‘Peanut Kid’ all week long. (For instance, “Here’s your special peanut-free dinner, Peanut Kid”).

Though I appreciate that someone fortunate enough to have a drastically more co-operative immune system may not have much experience with the dos and don’ts of #allergylife, I am sometimes thrown off by the occasional insensitivity around the issue of severe allergies (including a comment once suggesting that the universe is ‘trying to get rid of me’).

Listed here are several points that have come up in conversation at one point or another while explaining my situation to others. I hope that this will help to clear up any misguided assumptions about people living with severe allergies, and the lifestyles such people must adopt in order to eliminate the risk of experiencing potentially life-threatening situations.

Of course, nothing mentioned here should be interpreted as a substitute for real medical advice or information. If you or, someone you love, has severe, life-threatening allergies, please work with a medical professional to ensure proper lifestyle management and emergency planning.

1. We know that it sucks.

You know what makes it worse? Constant reminders.

“So, wait, you’re telling me that you’ve NEVER had lobster?! Oh man, that sucks!!!”

I am fully aware that it ‘sucks’. What are you trying to accomplish here? Feelings of guilt? Frustration? FOMO? It’s not as if I can use your remark as inspiration to seek solutions to my lobster-less life. There is no option for self-improvement here. Many of us have come to terms (reluctantly so) with the fact that we will never (ever) be able to eat lobster or oyster or Peanut Butter Cups or [insert allergen here], despite how much it ‘sucks’.

2. We are not ‘picky’.

Please appreciate the difference between a dietary preference and a serious allergy. When my office goes for lunch at a local restaurant known for its dismissal of customers’ allergy concerns (see #8), I inevitably overhear a co-worker say something like, “Mandy won’t be coming with us today. She doesn’t like the food at that restaurant.”

Actually, I’m pretty sure I would find the food delicious, but ignoring my instincts and eating at this restaurant despite my doubts about their ability to create a safe environment for me could also result in a (very preventable) hospital visit, at minimum. We find it highly insensitive (and borderline offensive) to label us as picky eaters or to relentlessly harass us over something beyond our control. We’re required to be selective; this is not the same as being picky.

3. Severe allergies are not intolerances.

I sympathize with those who are intolerant to certain foods or food groups. It really sucks (see #1) to always be on the lookout for ingredients with the potential to cause any sort of adverse health effect. In no way am I arguing that intolerances do not need to be taken seriously – they absolutely do, for many reasons.

Severe allergies, however, are often immediately life-threatening. For some, even slight exposure to an allergen can cause reactions such as hives, swelling, and worst of all, anaphylaxis, which can lead to dangerously low blood pressure, loss of consciousness, and death. It is for this reason that the risk of cross-contamination or unidentified ingredients cannot be taken lightly in these circumstances, whereas some individuals (though not all, I am aware) with varying degrees of intolerance may be willing to occasionally risk discomfort or other complications to appreciate a particular meal or treat, given that they anticipate the benefits will outweigh the costs. Those of us with life-threatening allergies never have that option.

4. Conversely, intolerances are not severe allergies.

I understand that ‘allergy’ and ‘intolerance’ are occasionally used interchangeably. Again, everyone should recognize and attend to all dietary concerns, whatever they may be, but the outcome of consuming dairy will be very different for an individual who is lactose intolerant compared to someone who is deathly allergic.

5. Self-injected epinephrine is the first step in, not a substitute for, immediate emergency treatment.

Contrary to popular belief, administration of an epinephrine (i.e., adrenaline) auto-injector does not guarantee that a severe allergic reaction will come to an end; rather, the purpose of doing this is to buy the patient time while waiting for emergency medical treatment. Therefore, being in possession of epinephrine does not give us the freedom to take unwise risks with our allergies.

My friends (though I know they have the best of intentions) often urge me to join them on summertime camping expeditions, venturing into unfamiliar territory hours away from medical help with no cell reception, under the assumption that I could easily walk away from a wasp or hornet sting, granted I bring along an EpiPen or two. Unfortunately, there is no way to predict the behaviour of any allergic reaction. It is for this reason that immediate emergency medical care is still absolutely necessary following use of self-injected epinephrine.

6. Some of us still developed allergies even though we played in the dirt as a kid.

Numerous studies have investigated potential links between childhood exposure to ‘germy’ environments (i.e., dirt, pets, other germ-ridden children) and the development of allergies. Children who are raised in overly clean and sterile environments are said to be at higher risk of developing allergies, presumably because the immune system doesn’t get enough of a ‘workout’ early in life. This is a plea, from me to you, to not treat such information as an absolute fact; some kids who grew up in ‘too-clean’ homes did not develop any allergies, and some kids who rolled around in dirt all day still ended up developing allergies anyway.

You’d better believe I played outside almost every day, ate dirt (probably until an alarmingly late age), and got my fair share of cuts and bruises. I guarantee I grew up in messier and less sterile conditions than many of my allergy-free peers. But here I am, allergy-ridden, despite my germy childhood. Yes, I suspect that our overall societal obsession with antibiotic-this and aseptic-that is part of the equation, but many of us spent a lot of time outside, played in dirt, and licked floors, yet still developed allergies. There are many factors at play here. Don’t make needless assumptions and blame this on my parents’ (perfectly normal) cleaning habits.

7. We won’t get over a severe allergy by casually exposing ourselves to it.

This would be an incredibly irresponsible thing to do. Though allergy desensitization has been established for some allergies (such as insect stings, though not so much for food allergies), immunotherapy should always be conducted by a medical professional and executed with extreme precaution. This is in stark contrast to, “Here, get a whiff of this peanut butter – that should do it!”.

Again, it is extremely insensitive (and foolish) to suggest to someone with a life-threatening allergy that they ‘train’ their bodies to ‘cure’ an allergy by smelling/tasting/eating the very thing that will cause harm.

8. Please stop downplaying the risks of cross-contamination.

Even though [allergen] was cooked/grilled/microwaved half an hour ago, and no remnants of said allergen are visible on the grill/pan/plate, this by no means guarantees an allergen-free environment. Food residue on a surface (or in rare cases, in the air) is sometimes enough to elicit a serious allergic reaction.

My zany immune system doesn’t care whether or not you can physically spot the threat, so we ask that you please trust our judgement and refrain from labeling us as paranoid or unreasonable. Many of us have been dealing with allergies for quite some time – we’ve become very skilled at steering ourselves away from these types of hazards. As previously suggested, the fear of cross-contamination is heightened when eating at a restaurant or any place where we no longer have control over the conditions in which our food is made, which is why we may avoid these scenarios if we are wary of allergy protocols in the kitchen.

9. We are often uncomfortable trying new food.

Please don’t push us to try unfamiliar foods if we are noticeably uncomfortable. We can become especially nervous if the food is from an unknown source, if we aren’t sure of the ingredients, if we are traveling somewhere with much different food than we are accustomed to, or if allergens of concern could be in close proximity. Often times, you’ll find that we don’t have the same curiosity towards new, exotic food as you do.

To be honest, unfamiliar foods probably scare us more than they appeal to us. Please respect this, and understand that as much as we may want to show you our adventurous side, doing so through our diets isn’t worth the potential consequences. Sometimes, I’m perfectly okay sticking with bland, unexciting food.

10. We know that allergies are ‘uncool’.

Believe us – we know. Even though MedicAlert bracelets and necklaces are better disguised as mainstream jewellery these days, that bling you originally thought was really cute tends to lose its appeal once you discover that the faceplate is crammed with information about shellfish and stinging insects and anaphylaxis and asthma. Trust me – I’m not trying to brag; this is not a my-allergies-are-cooler-than-your-allergies competition. I’m just trying to take care of myself, despite how ‘uncool’ it may be.

11. It is not ‘in our head’.

Yes, I’ve actually had someone try to convince me that I have allergies because I willingly invited them into my existence, or something equally as ludicrous. (Though wouldn’t it be nice if this was the solution I’ve been searching for all these years?!). Mind over matter doesn’t work here – sorry folks. TC mark

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