Anaphylactic Allergies- Nothing Fishy About It.

This month is allergy awareness month. Did you know teal is the colour for allergy awareness? Some buildings will be lit up blue this month. At Halloween, people may have teal pumpkins indicating they have allergy friendly treats for kids. However, much of the work that is done remains tokenistic at best.

One of my biggest pet peeves around health promotion are how allergies are presented in popular culture. Bart Simpson is chased around with a peanut, people laugh. Some actors head swells up because they came in contact with shrimp. People laugh. Someone can’t breath and has disfiguring hives, use their epi-pen and life goes back to normal. SNL does skits minimizing allergies and people laugh.

The more of these messages people see, the less likely they are to believe that something as simple as exposure to someone at school or work having leftover fish could land someone in the ER- or worse.

In my experience, people seem to feel like they have a right to question if allergies are real or suggest “what about just one bite” it can’t be that bad. Or “I have hay fever. I know what allergies are”. This is also supported by popular culture, as many times when someone doesn’t want to eat something or don’t like the taste, they’ll claim it’s an allergy or allergies will be presented as sneezing.

I had a boyfriend when I was a teenager who claimed to be allergic to mushrooms. The lasagna we were eating had mushrooms in it, we rushed the food out of the house when he disclosed this allergy, an allergy that his mother later told me was fake and his way of getting out of eating mushrooms because he didn’t like the idea that they were grown in manure.

For someone like me, a person who does have anaphylactic allergies, I try to educate people about what anaphylaxis is. I try to talk through what a reaction looks like and how the face “blowing up” is not how I usually present, and is not how a lot of the more serious life-threatening reactions people have show up.

·       I try to explain that my allergies are real, that yes I have been to the ER more than once because of my allergies, and that no, I’m not going to show them what a reaction looks like.

•  I try to explain that while an epi-pen is most certainly a life-saving tool, it is just that, a tool, and is only as good as the next steps in the response and must be accompanied by an ER trip.

• I try to explain how the particles that I am allergic to often are lighter than air and so these suspend in the air and when I breath them in, I can stop breathing all together.

  
  

But information from movies often win out. And people often don’t believe that I can be allergic to something other than peanuts.

It's common for people to see my allergies as infringing on their “right” to eat whatever they want whenever they want or to have the quality of life they prefer, not necessarily thinking about what isolating and excluding the person with the disability, and anaphylaxis is a disability, feels like. For example:  

• I have been invited to the wedding ceremony but not the reception because people want to have a fish option.

• I have been invited to have cake after people go out for birthday dinners- provided I supply a nut-free cake of course.

• I have had to ask dates what they ate that day and do an inventory before a hug or a kiss, consent takes on a whole other level of safety (and had people lie and I end up having a reaction).

• I have had people at pet stores suggest I get rid of my cat if I can’t serve her fish when looking for fish-free pet foods (surly a cat having a good home and eating chicken is just fine- after all there are definitely street cats that don’t eat fish).

• I’ve had to think about where I live, making sure that I don’t have a shared hallway in the event a neighbour is cooking fish, which means I usually need more expensive accommodations.

• I’ve had to watch where I walk and where I travel to avoid any fish markets or areas where rotting fish might be at a boat launch.

• I have had flight attendants tell me that I should not travel, but also that my flight should not be refunded and I have had to extend my stay in locations until I could be on a flight without fish being served, usually traveling early morning helps with this.

• And I’ve had coworkers and supervisors “test” my allergies by exposing me to things I cannot be around to “see what happens”. Nuts have been mailed to my house, oranges have shown up in meetings, and people have microwaved fish and then said I can ‘look in their lunch box, you won’t see any fish’ when I questioned it- of course the person ate the evidence.

Imagine, for a moment, living through any one of those situations. Now imagine that it’s daily. But also imagine staying in a bubble alone because of these things- this is often suggested as a solution but it isolation is never a solution. We know isolation leads to innumerable health issues including heart attacks, stroke, heightened suicide risk, and early death. Staying home to avoid allergic reactions is not the answer.

Sometimes people say you have to live in “the real world”. And that is true. But in my real world, I don’t go out for sushi and don’t serve it at home. My real world does not involve peanut butter sandwiches. My real world involves people who are kind, compassionate, and understand that people have a right to safe places to work, play, and pray, and that involves others finding alternative places to eat foods I’m allergic to.

Every day I face the possibility of risk by just leaving my house. This has meant that I have taken chances, I have done some amazing things and gone to some really interesting places. You never know how long you have or what the quality of life you will live is. But it should not be made worse or shorter on purpose because people put their own interests above someone else’s wellbeing.

I have a lot of hope for younger people, people who have grown up with schools and daycares that are nut free. People who accept that allergies are real because they grew up knowing that accommodations are necessary and they would rather be inclusive than exclude someone based on something they cannot control or prevent (and no, antihistamines and exposure therapy do not work for everyone to prevent anaphylaxis).

Because, for people who take that approach to life, there really is something fishy about them and it really is pretty nuts (allergy puns intended).

If you or anyone you know have questions about anaphylaxis, feel free to reach out. I am always happy to provide coaching about living, studying, working, traveling and eating out with allergies based on 40+ years of personal experience and my professional training in health communication and patient advocacy.

*Image from https://www.freepik.com/free-photos-vectors/food-allergy