Reactions, part two: Social aspects

In my last post, I talked about the painful physical process of the near-fatal allergic reactions that I’ve been having since the age of 14. In this post, I want to address the aspect of these “attacks” that is, in some ways, crappier than the actual attacks: peoples’ reactions.

Often when I mention that I am allergic to certain foods — when I am, for example, meeting people for the first time in a situation where there is food, and where these issues may come up — I do not mention that my allergies are potentially life-threatening, as I’ve learned my lesson from some of the past responses of certain acquaintances:

“So you could die from eating peanuts? I’ve never heard of that.”

“I knew this kid who was allergic to [food], and he almost died.”

“Whoa, if I couldn’t have [food], I would, like, die/miss it soooooo much. Do you miss [food]?”

“Peanut allergies are so over-diagnosed! Parents these days are way too overprotective of their kids.” (Hilariously enough, this one gets trotted out in regards to some other disabilities/health conditions as well.)

“Are you sure you’re allergic? It could have just been a one-time thing.”

“How much of [food] could you eat before you’d have to go to the hospital?”

It could be that some of these folks are just trying to make conversation (particularly in the second and very last examples), but most of these responses have left me either totally baffled or itching to make some sort of snappy comeback. Because I am a fairly polite person in my day-to-day life (no, really!), the times that I have made snarky comments in response have been relatively few. While the disability activist part of me firmly believes that I have zero imperative to politely respond to cluelessness about something that could kill me (and almost has), my own social programming tends to stop me from doing or saying anything rash. The thing I resent, though, is that sometimes I am treated like a human “learning experience” of sorts — some people, once they find out about this health condition of mine, become convinced that they can bounce their conspiracy theories about how all peanut allergies are caused by anxious parents off of me, or delight me with anecdotes about this kid they know who was allergic to, like, everything and was in the hospital for a month this one time. Or perhaps they get really bad hay fever in the springtime, and they are just so excited to find someone who knows how annoying and awful allergies can be!

Somewhat ironically, the most heinous unsolicited comment on my reactions that I ever got was from a friend of my mom’s, who had known my family for a very long time. This woman was of the ardently “spiritual” sort — this is not, in itself, a bad thing, but in her case, parts of it happened to translate into a long-standing belief in the universal applicability of “alternative” medicine and mind-body integrative healing. One afternoon, this person phoned my mom in an utter panic, convinced that she knew the reason for my scary and bewildering allergy attacks. She had a piece of proof that no medical science person could possibly have:

“Anna is faking her allergy attacks to manipulate and control you!”

This is not something that anyone, particularly an already-frightened 16 year-old who has no idea why she still gets these attacks spontaneously, should have to hear. My mom, to her credit, excused herself from the conversation with this person, and then told me about what had happened — adding that should this person call back, I did not have to speak to her if I did not want to. (Which I did not, for the record.)

In that interaction lies one of the most crucial issues regarding the way many people with disabilities are treated: Those of us with potentially life-threatening health conditions are never to be trusted. Those of us with chronic health conditions are never to be trusted. Those of us with disabilities must be faking it to get attention, to gain the upper hand in whatever way we can. We must be using our conditions as excuses to get pity from those close to us, or from anyone, really. We must be faking — things can’t really be that bad. That dire. That frightening to us and those who are close to us. Those of us without “objective” proof are constantly suspect, constantly under scrutiny from nondisabled people (at times, even from other people with disabilities); a similar process is at work even for those who do have “objective,” concrete proof of their disabilities or conditions. Are you sure you’re allergic? You could eat peanuts if you really wanted to, right? She’s just acting like that for attention. She’s just using it as a get-out-of-[whatever]-free card. Well, I’VE never heard of that! Are you sure it’s not just psychological? I knew this one guy. . .

That burden of proof has always been on those of us with disabilities and/or health conditions. And sometimes, it’s a burden that feels almost unbearably heavy. No matter how scary the condition you deal with can be, someone always has a question about it, or a theory, or wants to try a misguided attempt at solidarity. Well, you may be thinking, would you rather not have people react at all, since you’re complaining about it so much?

What I would rather have happen is for people who do not have my condition or similar health problems to recognize that, for once, they may not be the experts on something that they have never experienced, or that I do not have any sort of “ulterior motive” simply by having a health condition that just happened to come out of nowhere, or that I may have heard the “do you miss eating [food]?” question countless times. Or that I have a lived experience that is just that — my experience — and that it is different from theirs. For me, simply having that be okay — in other words, not subject to constant monitoring, anecdotes, questions, guessing at motives, trying to find “common ground” based on a pretty uncommon issue¬† — would be enough.

11 Comments

  1. Oh, food allergy ableism…

    A story I heard from my mother, so I don’t know all the details or even have talked to the woman it happened to: One of my relatives is allergic to turnips. So she goes to a friend’s for dinner and it turns out they mixed turnips in the mashed potatoes to “prove” to her that she wasn’t really allergic. I think they were convinced afterward, but they shouldn’t have had to be convinced.

    However, I know a lot of people act like food allergies are an attempt to “get away with something, like it’s some kind of…as that woman told your monther, emotional manipulation? I’ve heard that more than a few times about people. It’s like, why would anyone lie about this? It makes no sense.

  2. The thing that’s common to all the responses you get (and I’ve gotten similar ones) is that people want desperately to get away from the discomfort of realizing that life is a difficult, messy, imperfect thing. I think that’s what we disabled people represent to the general population: everyone wants thing to be “nice” and “normal” and then we show up and remind them that there ain’t no such thing. The difficulties of life are what the larger culture is always trying to “cure,” and when we come around and say that we have a difficulty that is not subject to cure, people secretly panic. So they try to turn the disability into a character flaw (“You’re just being manipulative”) or into an opportunity for narrative (“Oh, I knew someone just like you!”) or into some kind of fact-finding mission (“So, how does it feel to be….?”). God forbid they should just stand there and say, “Oh, okay. I’ll make sure not to make anything with peanuts,” or in my case, “Oh, okay, I’ll make sure not to have earsplitting music on so you can hear me.”

  3. This is partly why I resent it when friends and family members acquire cats. I am violently allergic to cats. I get hives. My eyes swell and itch so badly that I can’t do much of anything. Even the most casual contact with a cat (I don’t even have to see that cat to have a reaction) ends with me taking a massive dose of anti-histamines and zonking out for the rest of the day. Yet people seem to think that I am the problem when I ask if there are any cats around when invited over to someone’s house for the first time or respectfully request (or explain that I won’t be able to be there) that we gather somewhere else if there is. And no, it doesn’t matter if you keep a really clean house. It doesn’t matter if you vacuum or if the cats aren’t allowed on certain chairs or if you plan to keep the cat locked in the bedroom. If you have had a cat living in your home at any point in recent history, I will not be able to spend any significant amount of time there without getting sick. No, I won’t actually die, but it will effectively end my day and possibly even my weekend depending on how severe my Benadryl hangover is.

  4. This piece is spot on, I am also confused by those who insist that someone else’s allergy/disability/illness is being put on for attention, because those things obviously bring us all such welcome and positive attention, not ignorant, intrusive and often downright rude comments from relatives, friends and strangers, I suppose it’s all part of the ‘special treatment’ narrative with a bit of the ‘if it’s not a real thing then I don’t have to worry about it happening to me’ attitude thrown in for good measure. The problem is I don’t think people who make these comments realise that attitudes like this can have very real and devestating effects on people’s lives, as in the example of people who decide to ‘prove’ to someone that they’re not really allergic to something by hiding some of it in their food. I find it shocking that anyone needs to see someone being taken to hospital before they can believe them when they say they have an allergy. When I was two years old my parents started noticing that my eyes were very red and sore looking and took me to see the doctor who told them that I was ‘attention seeking’, they had to fight to get me to see a specialist but by then I’d already lost the sight in one eye. I know this isn’t an allergy story but it reminded me of the story of your mum’s friend who somehow believed that you were managing to bring on violent physical symptoms through force of will only, I suppose if medical professionals can believe this kind of thing then no wonder so many people have these damaging attitudes.

    The only other point I have to make is one that’s been made on FWD many times, when ‘well-meaning’ people ask us if we’ve considered cutting out x food because they read somewhere about someone who had x condition, stopped eating x food and is now cured, seems like everyone’s an expert on food allergies these days and PWD lose out either way, either being told that they’re causing their disability by eating x or that they’re faking their allergy to x, for some reason it’s considered that we don’t know more about what our bodies need in the way of diet than someone who’s just read about in the paper or once knew someone who knew someone who had the same thing!

  5. When I developed a small but gradually worsening allergy to alcoholic drinks (some drinks are safe, but for various reasons, we can’t test to isolate the exact ingredient that’s causing the trouble with ‘unsafe’ ones), it amazed me how people downplayed it.

    Social drinkers tend to be uncomfortable if anyone breaks ranks without the excuse that “I’m driving”, but the fact I was drinking regularly for the first time in my life also meant they could undermine my judgment by saying the tingling and reddening I felt were normal responses to alcohol.

    I KNEW that wasn’t right because I’ve had drug reactions that started that way, and doctors confirmed that I do have an allergy. And yet even now, knowing that, if I get tingling lips drinking a previously identified safe drink, people write it off. My experience is not trusted and that hurts.

    It seems that people are terribly quick to decide that if food is involved in a condition’s progress/triggering at all, then the condition must be either imaginary or the fault of the eater. I wonder if it’s linked to the blaming and shaming that are so common re: food and weight – somehow, what people eat and how and when is a major societal touchstone for people’s urge to judge and control others.

  6. @Ang: Oh, gah. I also don’t drink, but it’s not because of allergies– it’s because drinking makes me even more prone to sensory overload, and even more spacey than I normally am (and I’m normally quite out of it). And of course, people just do not get it when I try to explain this to them.

  7. I hear you, ladysquires. I’m very allergic to cats, too, but for me the worst thing is that it makes it hard for me to get air in. I’ve even reacted to secondary exposure to a cat — someone who was in possession of a cat sat on my bed-covers and I woke up that night gasping for air. I hate the uneducated excuses of people with cats, too. “We don’t let the cat in this room” means nothing to me. I’ve reacted in a place where they’re had never been a cat at all. (Though I will admit, there was one family that was right… but this family had lots of allergy-mitigating filtering and they were absolutely obsessive about cleaning, including their furniture, their tapestries, their cat and much more.)

    When I first developed the allergy, my sister was convinced I was just pretending because I didn’t want our family to get a cat. She wanted us to get one anyway because, seeing I wasn’t getting my way about it, I’d stop being allergic.

    I do hate it when people act as if asking about things is rude. Any time I’m invited to someone’s house or someone’s wanting to come to my place, I have to ask if they have a cat. And if they do, I have to ask for meeting elsewhere or tell them I can’t stay long (if I’m visiting) or give them instructions on what I need them to do (if they’re visiting). All this tends to be seen as really rude, but breathing happens to be important to me.

    As to the being disbelieved, the cure evangelism, and the misplaced solidarity, I get that not for my allergies but for my MS. Nothing like inconsistent symptoms to get one disbelieved. (That and the changes for me were sudden and extreme, so almost everyone I knew beforehand didn’t last.) It occurs to me that the cure-bies don’t make sense. Their thing goes something like: “B (in my case, MS) is a dread disease that can be entirely cured (even reversed) if only you do/don’t do X.” Only… if it could be so easily cured, how is it such a bad thing to have it? Lacks internal consistency. Ah, and it seems everyone knows or knows someone who knows someone with MS, so obviously if their aunt’s brother-in-law has it, they know how it is for me, know what kind of things are wrong with me, know how to treat me, etc. No. Highly variable disease. Lots of different possible symptoms, severity, courses… Lots of differences. And, of course, a little bit of knowledge is a dangerous thing.

  8. I know someone who is allergic to peanuts and someone once thought it would be funny to throw a peanut M&M at him wtf.

    I also got asked if I was trying to kill one of my friends when I offered her a mint (verbal only, I didn’t try to hand it to her). She’d never told me she was allergic to mints; if I’d known I wouldn’t have offered.

    Geez I don’t have allergies but it isn’t that hard to not try to provoke allergic reactions in people around you when they TELL you what they’re allergic to.

  9. I know I shouldn’t be, but I’m shocked at the cluelessness and obnoxiousness of these people. Because peanuts are probably the most common food allergen there is, and it’s well known that they can cause anyphalaxis, so wtf?

    But also, the reason it’s shocking is that I have loads of food “issues” (sensitivities, gluten intolerance, and a small number of “true allergies” — none of which are life-threatening, but they certainly can cause problem) as do most w/MCS, and what I and my friends w/MCS hear all the time (esp. from doctors/allergists!) is…

    – But that’s not a real allergy, that’s just a sensitivity, and/or
    – But you don’t go into anyphalaxis/die from that, do you? and/or
    – If it was a TRUE/IgE-mediated/etc., food allergy, that would be real and valid, but since it’s JUST celiac/food intolerances, etc., you’re faking; it’s psychological/spiritual; [other invalidating bullcrap here].

    So, what I learn from your piece is that, as usual w/ableist bullcrap, it’s heads you lose, tails you lose. And YEAH, I do get pretty tired of the “Don’t you miss? What do you EAT? If I couldn’t eat … OMG!” too!

  10. Thank you, thank you, thank you for this post. While I have MS and not food allergies, I can really relate to the way other people accuse you of having an ulterior motive. Every semester, I must disclose my disability to my professors, and every semester, when I explain about my unpredictable symptoms and the fact that there is a chance I might have a flareup and need to miss a few weeks of class, every one of them cocks their head to the side, and says something like, “but you look just fine. So…you just *get* to have a lenient attendance policy?”

    Like I am making it up to coerce them into giving me a get-out-of-class free card.

    Like I am just another lazy student making up excuses to slack off.

    Like I am demanding “special treatment” that gives me an unfair advantage over the rest of the class (rather than simply asking for accommodation).

    And at this point in the conversation, while they’re looking me over and judging me to be “just fine,” I always feel like they’re expecting me to visibly perform my disability. Like they’re staring at me and thinking, “do something disabled, so I can see proof that you need this special treatment.” When I was first diagnosed, I used to cave in to this pressure, and I’d begin to rattle off a list of symptoms. Just so that they’d have an idea of what I was going through. But I found that to be kind of humiliating, especially if they acted unimpressed. As in “oh, your arm going pins and needles, that doesn’t sound so bad.” So it became a desperate-feeling attempt to convince them of my disability. An icky feeling, for sure.

    But I –WE– don’t need to prove or perform our disabilities to anyone! I’ve been trying to hold true to that, and reading blogs like this helps me be strong. Thanks again — I will def. keep coming back to FWD!

    @ Beth: I’ve gotten disbelieved for my MS, too. If I hear the phrase “oh, but you look just fine” one more time, I’ll……I’ll…..ok, well, I’ll probably just grit my teeth and seethe at them. But I hear ya.

  11. Thank you for this post.

    I had a life-threatening milk allergy as a kid, which I’ve since “grown out of”. (Quotes because I still react, it’s just not as severe. I get all the weird symptoms that people don’t recognise as an allergic reaction, like anxiety. Funtimes!) I carried an epi-pen for years.

    When I was fifteen, I got told by my uncle that there was no such thing as a life-threatening allergy to anything other than nuts, that all I had was lactose intolerance, and that my mother was just overprotective so she made the whole thing up. He kept pressing on like this, to the point where he made me cry, and then yelled at me for crying because he was embarrassed to go back to the restaurant we were at.