Guest Post: Tips and Kitchen Hacks for Cooking with Ehlers-Danlos syndrome
Today we have a special guest blog post from Youtuber and professional baker Bite of Banality, who will be sharing some basic tips for cooking while living with the connective tissue disorder Ehlers-Danlos syndrome (EDS). EDS can cause joint dislocations, pain, difficulty standing, limited mobility, and more. Bite of Banality’s Youtube channel focuses on recipes that are easy to make and eat and kitchen hacks for people with EDS. Note: As an Amazon Associate, I get commissions for purchases made through links in this post. Thanks for helping to keep the Accessible Chef site up and running!
I’ll admit I’m currently suffering a moderate-to-severe case of writer’s block. As I sit in front of this screen, staring into the void of technological nothingness, I will forcefully say to myself, “Write what you know.” I will repeat this mantra of “Write what you know” numerous times until I pause and begin to scream, “I don’t know anything!” This was inspired by my favorite 90s Canadian comedy troupe, The Kids in the Hall, about a writer who decided to write a book despite suffering from writer’s block. I firmly believe that it serves an important lesson not just for writing, but also for cooking while disabled.
I’ve found myself in pain but in need of dietary subsistence and resorted to what my mother called every Jewish woman’s favorite recipe – takeout. *sigh* Unfortunately this model is expensive, and while perhaps delicious, usually unhealthy. But when your joints are dislocating and the pain blocks any rational thought you may encompass about food, sadly the easiest and maybe dietarily worst option is ordering delivery. So instead of falling into the trap of staring into the void of a kitchen frantically muttering, “Cook what you know … I DON’T KNOW HOW TO COOK ANYTHING,” here are some basic tips I’ve learned for cooking while living with EDS.
Step I: Buy simple, basic ingredients.
There’s a reason why bread, milk, eggs, grains, meat, fruits, and vegetables are staples, and it’s because they’re fundamentally versatile foods. Even though many people with EDS have dietary restrictions, we live in a woke era where alternatives are easy to find. A key to cooking is buying simple and basic ingredients that you can turn into multiple dishes.
Food culture today has us believing that every meal needs to be an hours-long, expensive, everything made-from-scratch process. Nah bruh, sometimes it’s just Tuesday and there’s nothing wrong with slapping tuna on bread with mayonnaise. And contrary to today’s narrative of everything food-wise must be fresh and pure and clean, I’m telling you now that it’s okay to take shortcuts. It’s okay to buy shredded or pre-sliced cheese if one of your joints dislocates from dismantling the whole stuff. It’s also okay to buy prepared fruit and vegetables if you can’t use a knife because your hands hurt. The bottom line is: make the process of feeding yourself as easy as it can be. If you need the shortcut, take the short cut because you’ll still get to the destination.
Step II: Modify your diet to what you can physically eat.
Does your jaw dislocate at the sight of raw carrots? Gluten got you breaking down and out? Instead of saying, “I can’t eat that,” focus on what you can eat. We live in a time where there’s an alternative to nearly everything. Bread is usually too chewy and too tall for my jaw to handle, so I found soft, easy-to-chew wraps instead. It’s an easy enough swap and this can be done with so many foods. Plus, foods can be transformed to make them easier to eat as well, which I’ll discuss in more detail in a bit.
Step III: Buy in bulk.
Do ask yourself, “What do I like to eat?” On the surface, this question seems like it should be relatively easy to answer, but when you find yourself in the habit of whipping out your phone and ordering whatever is the most convenient, this task can seem almost daunting. Do you like pizza? Then stock up on premade crusts, the aforementioned pre-shredded cheese, sauce, and whatever other toppings strike your fancy.
While the upfront costs of buying in bulk can be more than buying in small amounts, the savings over time do outweigh it, if this is something you can afford to do. Like rice? Buy a few pounds and keep it on hand; do this with nearly any food you can think of. The more easy-to-prepare foods you have on hand when hunger strikes, the more inclined you’ll be to cook instead of ordering in.
Step IV: Make extra and preserve.
I’m not going to lie, there are days that no matter how much easy-to-prepare food I have on hand, I’m still not going to be able to physically cook it. In this case, I turn to my stockpile of vacuum-sealed and frozen food. Whenever I’m up to the task of making food, I try to make two or three times the amount and preserve it for later. Getting a vacuum sealer can cost you a little bit of money upfront, but given the amount I used to spend on take-out or pre-made food, the vacuum sealer paid for itself after a few uses.
So on the days when I’m actually able to stand, use my hands, and my shoulder doesn’t dislocate, I make the best of it and cook as much as I can. And, of course, you can also make a big batch of soup (for example), keep it in a container in the refrigerator, and eat that for a few days in a row; ain’t no shame in that game.
Step V: Modify your kitchen.
If you have EDS, you probably have experience finding tools to make life easier, and with cooking and food preparation it’s really no different – find the tool to make the task better and more convenient.
My sacroiliac joints are not big fans of staying where they should be, but I bought foam mats that lessen the impact of standing. For days when I can’t stand, I bought an induction burner so that I can cook sitting down at my dining room table. Induction burners are also good if you have problems with temperature regulation or pass out from heat exposure because they don’t get nearly as hot as a regular stove top.
My hands almost constantly hurt when stirring, so I found silicone spatulas that have a large rounded end that’s easier to grasp. These types of handles also help me to keep a better grip so I don’t drop them, because, I’ll tell you what, I drop almost everything. The same goes for knives, too – go to a store where you can actually hold a knife to see how you can grip it. I like knives that you can actually pinch the area just above the handle so it gives you more control. My fingers and wrists do sublux constantly, but the more comfort and control I have over the knife, the easier it becomes to use and the longer I can use it.
I also have trouble bending over, and sometimes my elbows will dislocate while I’m lifting things. In order to remedy this problem, I invested in a toaster oven so I don’t have to bend over and reach into a large oven. Toaster ovens also don’t get nearly as hot as standard ovens, so I don’t feel like I’m going to pass out if the kitchen gets too warm.
And on some days, I have trouble with even the most basic act of eating: chewing. Having a blender and keeping a bunch of fruits and vegetables around (and some yogurt and other smoothie ingredients I enjoy) allows me to have these once again so-called easy-to-prepare foods on hand. It’s not complicated to make, I can always drink a smoothie, and if you buy all the ingredients in bulk, it’s really not expensive at all compared to buying it at retail.
Another tool that frequently helps me is a good food processor. I love salads, but there are quite a few days where even just eating finely chopped lettuce is too much for my jaw. So I’ll throw lettuce, carrots, and whatever other vegetables I want to eat in there and I’ll process it until it’s very fine so that I can eat it with a spoon (I know that sounds weird but EDS is weird). I’ve also done this with croutons. There’s no way I can eat a fully-formed crouton, but I’ll throw a bunch of them in the food processor before the vegetables and process them until they’re a bread crumb-like texture.
To conclude, only you know what’s good for you: there are so many options and alternatives out there for preparing food and it’s amazing. Don’t limit yourself to mainstream narratives about how you should make food and what you should eat, because what you have isn’t really mainstream. With some work, some research, and some ingenuity you can learn to cook.
So while you may not know everything, you probably know a lot more than you think you do. Don’t focus on “what do I know?” but instead focus on “what can I do?” Remember to always take it one step at a time. Over the course of a week, there were moments I could only muster up one sentence at a time, and some days you’re only going to be able to cook a little at a time. Find your starting point, research recipes and cooking techniques, do what you can, don’t force anything, and eventually, it’ll come. And, hey, I got through this article and you too can get through cooking.
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