Why Don’t We Believe in Allergies?

Today, I was incredibly moved by a post on the blog A Tale of Anaphylaxis. The author, epipenprincess aka Sydney, is a student who has quite a few anaphylactic allergies. In her latest post, she talks about how after a recent bout of anaphylaxis, some people were talking behind her back about how she was overreacting and making it all up. I was so moved because it reminded me so much of countless experiences I’ve had where people just flat out didn’t believe me. I know that a decade ago, I was a high school student with severe allergies and I made it through just fine, but I’m still in such admiration of Sydney’s bravery to not only handle the so-called “haters” but to do so the day after a reaction, on a blog, and with a positive attitude. That doesn’t sound to me like the sort of person who makes up allergies to get attention, or overreacts to things willy-nilly. Her immune system might overreact, but that’s about it. And for people to be gossiping about her while she’s sick – it’s disgusting. Somehow, I can handle this ridiculousness when it happens to me (most of the time, I do get riled up sometimes), but hearing about it happening to someone else just infuriates me. There’s this fad to not believe in allergies. Allergy agnosticism, if you will.

I get not believing in trolls, or leprechauns, or unicorns (though I sort of believe in unicorns). But allergies? That’s absurd. It’s not a thing to not believe in. Why do we believe in cancer or heart attacks or ADD but not believe in allergies? Because the idea of allergies is so crazy that we don’t want to? We can’t fathom living in a world where something harmless to us is actually a killer to some people – we decide we don’t like that notion – so we assume the person is crazy? If you can’t experience something first hand you don’t think it’s real? I wonder if the logic goes, “I could have a heart attack someday, so that’s real. But I have no history of an allergy, so anaphylaxis is probs fake.” This attitude – which, honestly, I think is pretty illogical – is also dangerous. What if Sydney were younger and not in tune with her body enough to know she needed help? I’ve been there. Thankfully, I never stopped breathing until a couple months ago, but I definitely had times where I didn’t take care of myself properly because I was convinced I was crazy. And why? Because enough people had told me I was crazy.

I remember one high school experience in particular. I was at a weekend seminar for school, and even though I asked the caterer what was in all the food, I mistakenly ate pasta with mushrooms. Once I found out there were mushrooms in the pasta, I kept eating it, because I had never tried mushrooms and thought there was no time like the present (oh, how my doctor would flip out now if he knew). I started feeling hazy and weird, and told my friends I needed help. At the time, I didn’t carry benadryl with me, because I didn’t react that often. There were no real rules about epipens and all that. So, we get the EMT and tell him what’s going on and that I need benadryl. He didn’t have any (also something that wouldn’t happen these days, I hope), and before he sent someone to get some, he “examined” me. At this point, I was freaking out that I wasn’t going to get medicine fast enough. I started having a panic attack, but when your throat is tight and you feel sick and you’re on the lookout for anaphylaxis, a panic attack isn’t the best idea. The EMT told me he thought I was only having a panic attack, and I assured him that panic attack or not, I was having a reaction, and that it was either getting worse or I was indeed panicking, but either way, I needed benadryl stat. Someone eventually ran out and bought some, I took it, and they sent me back to my room. I felt better after the benadryl, and thank God didn’t need epi. I remember another girl from my school who had a lot of allergies came to my room and calmed me down. She said she had heard what happened, and that no matter what anyone said, I knew if I was having an attack, and that if I needed anything, she had allergy meds with her and would help me if I needed to go to the hospital. She wasn’t a good friend of mine, more of an acquaintance classmate, but it meant the world to me that she helped me. I hated that people had been talking about me behind my back – I’m sure, like Sydney’s peers, they were saying not so nice things – but this girl weeded through that to support me. When my school’s professionals were lax, inattentive, not taking me seriously (and making it worse by doing so, as the longer I waited for the benadryl, the more scared I became, hence the panic attack), my friends and this girl had my back. I don’t know if the EMT didn’t believe me, or if the caterer didn’t believe me when I asked him what was in the food, but I know I wasn’t taken seriously, even though it was serious. It’s not a minor incident when you start to lose your eyesight and train of thought because of a food. It’s not as serious as not breathing, but it’s not a walk in the park either.

It’s not just the EMT who didn’t have his act together. The doctor at my college actually told my primary care doctor that she didn’t think, as a general rule, that allergies were real. I often have meals with people who think I’m making it up. People who say that no one outside of America has food allergies (except that Canada and other countries actually have better allergy laws, so I imagine they have citizens who require said laws). The first allergist I saw in LA didn’t believe in my food allergies even while she was testing me, but to her credit, she did believe in my environmental allergies. I feel ridiculous typing that, but she actually said to me, “sometimes people think they have allergies, but really they just have exhaustion.” Oh, so I was exhausted when I was being breastfed, and just never recouped that sleep in 26 years? Then she suggested I had  an ulcer. I do get ulcers from some medicines, and I can tell you, they feel nothing like your throat swelling, hives, loss of vision, and shortness of breath. She’s an allergist and she didn’t believe in my allergies. I can go on and on about people who have questioned me.

That said, there are more believers than non-believers. The way I’m learning to deal with these people who think I’m crazy is by focusing on the people who know I’m not. My friends who encouraged me to see an allergist and get treatment. The people who go out of their way to cook meals I can eat. The people who wash their hands every time they come to see me in case they just ate something I can’t have. The people who have taken me to the hospital. Who have talked me through taking medicine when I need to. Who look at menus when we go out to eat or when they order in and get something that’s easier for me to be around. My current doctor and his team of nurses who continue to educate me and go out of their way to check in on me when I’ve had an attack. And all of you who read this blog.

Sure, the non-believers put my life in jeopardy. They make it hard. There’s no excuse for them. But ultimately, they don’t matter. I know the truth, and the people who are important know the truth. Allergies aren’t something you can believe in or not believe in. They aren’t something to joke about or make fun of or disregard as unimportant. And while it’s exhausting to both have anaphylactic allergies and be brave, I’m going to take a page out of Sydney’s book and brush off the “haters,” and just keep on trucking, safely.

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14 responses

  1. Thank you so much! I am glad you found the post so moving! I also wonder what is so hard about believing in allergies! It was just crazy to know that while your laying in a hospital people who you thought understood are talking about you in a negative way! Thank you so much for this post I really appreciate it and your story is fabulous and so inspirational!

  2. You are an inspiration, Cindy. Just went for an allergist visit for the little man today, and it’s not easy being the mom. I’m sure it’s harder being the person with the allergies. Thanks for helping me learn about what my little guy’s experiencing, so I can be there for him if/when others are not.

  3. Well said…you took the thoughts right out of my head and put it out there! I truly am always amazed at the difficulty some people have believing in food allergies. My mom was diagnosed in her 30’s with Juvenile Diabetes (now known as Type 1 Diabetes) and she experienced some of the same…she was outwardly healthy looking and people just didn’t believe she could be ‘ill’. Great post! 🙂

  4. I find the fact that people don’t believe in allergies sometimes to be beyond confusing. And frustrating. Very frustrating.

    Nice to find another twenty-something allergy blogger (I’m 26)! While I love the mommy/daddy allergy bloggers, it’s nice to bump into a blogger who isn’t focusing on kindergarten.

    ~Kelsey

  5. Thank you for your blog! My daughter and my sister both have anaphylaxis-level allergies…and as a mom I know I’ve had people talk behind my back about my vigilance with school party food, etc. Ironically, my daughter’s friend has diabetes and everyone treats her like she has a “real” medical problem, unlike allergies, which apparently aren’t “real”…I needed to hear your positive take on it all! It is easy to get frustrated with people.

  6. Thank you for this post. I have been faced with a similar experience.

    My 5 year old daughter’s allergist didn’t “really” believe in cross contamination with food allergies until… I organized a tree nut touch challenge (not ingestion) in the allergist office. My daughter wanted to participate in Cook Day at school, not eating just cooking, but couldn’t unless she passed a touch challenge. As we entered the allergy office for the challenge, one of the nurses commented that “calming mommy nerves is also part of their job” (in reference to my desire to conduct the challenge in their offices). She made me feel silly but safety trumped silly in my mind.

    My daughter held cashews for 5 minutes, washed, and waited 20 minutes – no problem. She held pecans for a couple minutes, dropped one on the table put it back in her hand and finished the 5 minutes, washed, and waited. While she waited she colored at the same challenge table. She liked her artwork and slid it across the table to show the nurse, then being a five year old touched her nose and face. Immediately she started having a reaction. The nurse called for the allergist who looked very surprised to see my daughter’s reaction. They administered Benedryl and waited. She seemed to be getting better, and they continued to monitor her checking her blood oxygen level frequently. Then my 5 year itched her eye with the same finger that they had been checking her blood oxygen level. In seconds her eye swelled and she began coughing. Once again the nurse hurriedly grabbed the allergist, who immediately directed the nurses to administer the epi medicine. As a mom of a child with food allergies, I realized what the doctor’s office wasn’t seeing – we had a cross contamination issue. Not as myself, but as my daughter’s advocate, I began barking orders. Disinfect the table, throw away the coloring pages, everyone wash your hands with soap, take off my daughter’s shirt, … and then as the nurse got ready to test my daughter’s blood oxygen level again it hit me. They had been taking her levels before she washed her hands after holding the nuts. I flashed to seeing her touch her nose, face, and eye, and I yelled, “it’s the monitor! Disinfect the monitor!” As the nurses and doctor scurried around now following my orders, it scared me to realize “I know more about cross contamination then they do.” It was a scary feeling. As I was making this discovery, I overhead the allergist say (without realizing that I could hear her), “if this is her reaction to holding pecans, then if she ever ate a walnut it wouldn’t matter if she was sitting in the ER.” As a mom, I can never forget those words. I was no longer a mom of child with food allergies; I was my daughter’s food allergy advocate. No matter who it was who doubted her allergy, I would never doubt myself again.

  7. Very well said. When I was in high school I once had an ER doctor tell my parents he thought I was faking it. I was so upset but then I started to believe him and tried to get myself past my so called in my head reactions by eating food I am allergic to…then came to the realization he was wrong and I really have food allergies and I need to stand up for myself. Thanks for writing this.

  8. What a fantastic post! I am an allergy sufferer, and currently have food allergies so severe that just the smell of the warm food can do me in. My GP, to her credit, never ‘didn’t believe’ in allergies- after all, she has a daughter who is ana to eggs. She did have a bit of a hard time with the ‘smell’ thing, after all, many allergists will tell you that even if it is possible, it’s extraordinarily rare. That is, until the day I reacted to a lunch that had been brought into her office by a pharmaceutical rep. In front of her eyes, she saw me go from perfectly normal to a severe asthma attack in minutes. And I was talking to her- I hadn’t eaten ot touched anything. And the lunch was in the next room…. As she gave me epi and Benadryl, and called 911, she now agrees, that, even if it is extraordinarily rare, I have it! It was a bit of the ‘I trust you, and I believe you, but I’m having a hard time reconciling that with what I’ve been taught.’ Now, she’s a bit more on the ‘Hang what I’ve been taught, I know better.’ Needless to say, she’s a fantastic doctor, and even the best doctors have a hard time ignoring what they’ve been taught.

  9. I know exactly what your talking about. I now have to carry 3 epi pens plus meds for my allergies. I mean who is allergic to bananas not just eating them- I’m talking about cant be in same room as the fruit or be near someone who ate one. Last ER visit had 2nd attack after nurse walked in after eating a banana! Those Drs and nurses were shocked at what they were seeing! Many people at work claimed I was faking it!

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