The Trials of Invisible Illnesses: My Personal Encounters with Ableism, Part 2

I know a number of people who suffer from “invisible illnesses.” Any disease or disorder which does not make itself instantly visible to onlookers is often met with skepticism, and sometimes outright rudeness from disbelieving outsiders. I count myself lucky to not suffer from any such invisible illness that I consider truly debilitating. But still, those which are part of my daily reality can present me with frustrating encounters with ableist behavior.

Of my hidden health issues, the one that’s been most prevalent in my life is something many people suffer from: Food allergies. I’ve run into a lot of frustration when trying to express the difficulty of life with food allergies to folks who suffer with no such afflictions, but it wasn’t until I read someone else’s experiences that I began to see these encounters as manifestations of able-bodied privilege.

My allergies have been a part of my life since before my conscious memory was formed.  My original allergy diagnosis was made by my mother, as she logged my food intake and physical reactions as a young child, and slowly learned what items set off a reaction. I lived a relatively food-restrictive childhood, unable to eat the candies my friends did, or share Kool Aid at their houses, or even eat most of the snowballs we sold at our family business. But it was something I always took in stride, acknowledging that my problem could be worse, and I should be grateful for my ability to indulge in what I could.

Then, as I got older, I discovered new allergens. Food companies changed recipes, introduced new additives that I couldn’t tolerate, and further reduced my available pool of foods. Then my body simply started to react to the overabundance of additives in food as a whole, and I became allergic to things I’d previously had no issue with. New allergies still crop up frequently, and have often led to me running in bureaucratic circles as I try to convince national food corporations that I’m not trying to steal their proprietary information when I ask what unlisted “additional additives” their products contain, but am merely trying to ensure that I don’t encounter it elsewhere and suffer awful consequences from it. (For the record, this is impossible with the Coca-Cola company; they would rather a customer die from exposure to an unlisted ingredient than share what they use to color their Minute Maid energy juices.)

Living with food allergies can be a difficult thing to master. You’re stuck worrying about the social niceties of being a dinner guest, always running the risk that your host will become angry at you for something you have no control over. You can’t feel safe ordering whatever you’d like off of a restaurant menu, and are often stuck waiting for servers to acquire ingredient lists for you. (This often fails as well, as certain servers are not very thorough. On at least one occasion, I had a server tell me none of my allergens were used in a dish, only to have them inform me otherwise after I’d finished.) Certain venues can leave you without any safe options (carnivals are notoriously difficult for me), and you get stuck brown-bagging it in difficult situations.

The hardest part for me, though, is when people demand to know what will happen if I consume an allergen. I understand the curiosity, really, but it’s a rather rude question. I dislike being forced to outline all of my possible reactions, so I normally just summarize the most common one, and leave it at that. This most common reaction is that I’ll get hives on the backs of my hands, they will dry out, crack, and sometimes bleed. It’s a disgusting enough answer that people usually leave me alone. But it’s not the only possibility, and I simply cannot know how my body will react to every single encounter. Usually, my tattoos will swell and itch, as my body begins to attack everything it wasn’t born with. Sometimes I’ll get hives on my entire body, itchy, horrible, achy red splotches that can cover me from head to toe. Sometimes the reaction will be localized to my mouth, and my lips and the inside of my mouth will become red, sore, and radiate a horrible burning pain. I don’t like having to explain to people that, should I decide to indulge in that allergen-loaded snack they’re encouraging me to try, I may risk being in so much pain that I won’t be able to kiss my daughter goodnight without wincing in agony. And do I really need to explain the problems this can cause for my romantic life?

Of course, the problem with folks knowing about my allergies at all (let alone the possible severity of them, and which allergens trigger the worst reactions) is that suddenly everyone feels they have the right to police my diet. Demanding, “Aren’t you allergic to that?!” every time an allergy-sufferer knowledgeably indulges in one of their forbidden foods is akin to shouting at every smoker, “Won’t that give you cancer?!” every time they light up. Yet no one seems to recognize the former as irritating at all, while the latter is generally understood as something that’s rude, disrespectful, and not acceptable in adult company. My body is my own to do with as I please, and I will damn well eat that bag of Skittles if I want to.

Beyond allergies, I’ve got a slew of other invisible physical ailments: a chronic problem with intestinal dysbiosis, which led to a surprise hospital stay when it left me too weakened to breathe; chronic pancreatitis that, during a flare-up, makes me wish I could trade it in for the pain of labor and childbirth; a rather tricky bad back, which will leave me unable to move for days if I lift my daughter the wrong way; and an irregular heartbeat that I’ve thankfully only needed constant medication for during pregnancy, but which frequently leads to lightheadedness and occasionally to blackouts.

The first two restrict my dietary options even further, which is especially frustrating when people tell me about certain diets I should follow if I want to be healthier/skinnier/more socially conscious. Never tell someone with dietary restrictions that it’s “so easy” to up their protein intakes/eliminate carbs/go vegan; you know nothing about their dietary limitations and requirements, and assuming that those choices are as simple for them as they may be for you is insulting and ableist. Just as you wouldn’t tell someone with a prosthetic leg that it’s “so easy” to just burst into a sprint, you shouldn’t instruct dietarily restricted people on the ease of adjusting their eating habits. Some of us have a tenuous grip on our dietary health as it is, and lecturing us on how we’re still doing it wrong is completely inappropriate.

The latter two have primarily social impacts, as I’m criticized for not participating in things that put me at physical risk (moving is always a problem), or when I need to pause and catch my breath after a near-blackout, and I’m ridiculed for being “out of shape.” I’m called lazy and selfish, and am accused of simply not being up to the physical standards of others. While I’m the first to admit I’m not in any position to be running a 10K marathon any time soon, it makes my blood boil to be mocked because I’m in pain, or worried that I’ll pass out as my heart attempts to leap out of my chest at its own erratic will.

What this entire thing boils down to is simply an issue of respect. Never assume that you know more about a person than they know about themselves; never deem yourself worthy to judge them for their physical limitations, or declare yourself capable of instructing them on how best to remedy their problems. It is not the place of every able-bodied person to play doctor to those of us who are suffering; we have actual doctors for that sort of thing. And we also have the benefit of experience, which is something you cannot feign. I’ve spent 27 years learning to master my body, and I’d appreciate if my expertise on the subject was respected.

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About bunnika

shout at the brick wall; if it doesn't hear you, shout louder
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One Response to The Trials of Invisible Illnesses: My Personal Encounters with Ableism, Part 2

  1. Asia Morela says:

    Poor you! Life with allergies is indeed not fun, and I’ve always felt exceptionally lucky not to have to care about such things as what food I can or cannot eat.
    Still, since you’re talking about invisible illnesses and disorders, I consider myself as suffering from an ED (something akin to bulimia). I totally know what you mean about skepticism and disbelief; because I’m very skinny, people usually dismiss anything I might say about eating too much. It bugs me that, especially because I’m a woman, people systematically relate food to diets and weight (and justify what food intake is good for you according to the latter). “You can keep eating, you’re so skinny!” Yeah. Except eating shouldn’t be about my looks and what you guys think I need, but about my actual health, physical AND mental. My problem with eating isn’t even properly a health issue, but a control and addiction issue and as such, a very real one.
    Then people closer to me who know about it also tend to patronize me. “Oh, maybe you should stop eating now. You’ve had enough, right?” Except it’s not like that. I’m not out of control ALL the time. Sometimes I just enjoy eating, like anybody else… Anyway, were I binging, do you honestly think that just telling me to stop will help? I understand that are worried. But… what is this? If they really wanted to help, there are much better ways.

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