Part 1 of 2 It was the summer of 2020, and I had managed about two hours of sleep the previous night. Though I didn’t know it at the time, I was likely experiencing a gluten attack—having woken repeatedly with cold sweats and nausea.
My housemates and I had a nice backyard where purple flowers bloomed from a wall of green leaves. A tall Tahoe-esque tree loomed, and our cat often sniffed at the cherry tomato bushes. Frequently, my housemate L would work back there, of her own volition.
“Hey L,” I said to her that morning. “I didn’t sleep well last night, and I took the day off from work—so I was planning to nap for most of it. Is there any chance you might be able to take some of your calls outside today? Ia understand if you’d prefer not to, but wanted to ask in case it wouldn’t be an issue.”
I phrased it in a way that left space for her to say no—as a request, rather than as a demand. That’s why what she said in response caught me so off guard:
“E, I think it’s very selfish of you to ask something like that.”
Her response winded me. Though I hadn’t expected L to necessarily concede unequivocally to my request, I also hadn’t anticipated criticism and character attacks for simply asking (not demanding, or even expecting). A polite “no” would have gotten her point across just fine, but instead L went for the jugular. I noted as more hurt rushed in to join the pre-existing pain that had already been there.
Incidents like these confirm my worst fears surrounding asking for help, making requests, or stating needs as a person with chronic illness. When I was first diagnosed with Celiac back in 2020, these fears briefly became even more pronounced. Extreme vigilance is necessary for Celiacs to ensure that we don’t ingest gluten. We often keep separate cutting boards and utensils, and eating out is a fraught process—one that continually comes with risk and the stress of possible gluten contamination.
Because of all this, some see us as difficult, high-maintenance, and picky rather than simply humans just trying to protect our health against what science has proven to be a genuine threat for our bodies.
“They think our demands and requirements are inconvenient and annoying. We are too much trouble. We are overreacting,” writes actress and author Jennifer Esposito in her memoir about living with #CeliacDisease.
Even before I got my diagnosis, I’d written the following back in 2017: It’s become common to poke fun at people who request special food accommodations, or act like they’re a burden. They’re a common punchline in almost everything I’ve been watching or consuming lately.
This feels unfair to me. People with food sensitivities aren’t making these requests to be difficult; they’re making them because they’re trying to take care of their health. Maybe they break out in hives when they eat gluten. Maybe they feel lethargic, low energy, and dizzy after consuming dairy. The more we make these jokes, the more we discourage people from asserting their valid, extremely important need to keep themselves healthy.
It’s easy for those of us without food allergies or dietary restrictions to judge because we don’t suffer the consequences that they do. I think we should consider this a privilege.
As members of the #ChronicIllness community, how many of you have encountered dismissal when making requests that others either don’t understand, or downplay the importance of? Noise, light, and certain fragrances are common triggers for people with conditions that affect the nervous system and sensory processing. These are things that might not bother most people. But they negatively affects us.
It’s a personal trigger for me when a person has just dismissed a need, or when I can feel them shutting down on me. There’s a unique type of panic and helplessness that sets in immediately after. Little else makes me feel more viscerally unimportant and helpless than when someone does this (which I’m working through in therapy).
Some people respond to requests for reasonable accommodations as attacks, or as limits to their personal freedom. Maybe they think the person is just nit-picking. Or maybe they don’t realize just how profound an impact the, what’s in their eyes just a minor complaint, actually has on the asker’s well-being.
Complaints of discomfort that is not visible unsettles some people, is I think what’s beneath a lot of these reactions. Sometimes the internal discomfort sparked by these requests pushes them to turn against the sufferer. They might think (or verbalize) things like, “It’s all in her head” or “it’s probably not that bad.”
They don’t want to fully be