Earlier this week, Don started his “low-iodine diet” in preparation for exciting radioactive iodine therapy next month. He tells me he’s not allowed to eat milk or milk-products, soy or soy-based products, egg yolks, anything from the sea, iodized table salt, and all restaurant foods.

Food restrictions are pretty common for people with disabilities. A friend of mine discovered her chronic pain and fatigue was influenced, at least in part, by her wheat allergy, and described at length to me the perils of “hidden wheat” in things like Twizzlers, which is a brand of red liquorish available in North America. Another gets flair-ups if she thinks about stepping away from her gluten-free diet. Some people have serious allergies to corn, and must avoid any and all things with corn and high-fructose corn syrup. There are very specific diets required for people on certain types of medications, with certain types of short-term and long-term medical conditions, people with diabetes, and people preparing for types of surgeries. Many people recovering from Cancer treatments, surgery, or eating disorders, as well as people on certain types of medications that cause dramatic weight loss, are pushed (or required) to consume those “nutritional shakes” or other forms of meal replacements.

You know what’s fun for most of the above?

How incredibly expensive all of this stuff is.

So, let me go back to Don. Right now, all of Don’s favourite foods, and everything we’ve had stocked in the freezer, are off-limits. He tried to pick up rice milk so he could have some cereal, but surprise! Most rice milk in Canada is made with salt, except a very specific (expensive) brand that isn’t sold at our grocery store. So, either we need to go to the more expensive store downtown, I need to make rice milk (I have a recipe), or he needs to not have milk with his cereal for the next two weeks. We can’t find any bread we can guarantee is made without salt, so either he goes without bread at all, or someone makes him special salt-free bread. Today, while I was away, I think he ate some special, expensive, peanut-only peanut butter and salt-free rice cakes.

Because I’ve been busier than anyone probably should be, we’ve mostly been relying on very cheap, easy-prep frozen meals that are basically salt with food in between. I’m no less busy, but now Don needs to be eating so-called “real” foods that are time-consuming to prepare, and often very expensive to purchase, especially in comparison to how we normally do the food-thing.

If you’re not on a restricted diet, I recommend checking out some of the “special” foods that people on restricted diets need to purchase. See how expensive gluten-free foods are. Compare prices of cow milk, soy milk, rice milk, and nut milk. See how many things have “corn” in the ingredients list, and try and sort out how expensive it would be to try and eat nothing with corn in it, while still eating enough. Look at some of the stuff on the shelf and try and sort out what has “hidden” wheat in it.

The cost of these items is especially relevant because so many people with disabilities live near, at, or below the poverty line for their respective countries. Don and I are able to afford to spend extra money on this restricted diet because of family support, but this isn’t an option for very many people. If you do not have a restricted diet, imagine trying to afford the foods that allow you to eat without causing flare-ups in your chronic pain condition.

Imagine as well – and this, of course, applies even when one doesn’t have restricted diets – trying to put the energy and time into preparing these foods when dealing with second shift for the sick. Imagine trying to balance it all while some stranger tells you that your, or your kid’s, disability can be magically cured if you put your family on a special, expensive, restrictive, time-consuming diet.

Don and I are incredibly privileged in this. I can take the time and make him rice milk so he doesn’t have to eat dry cereal, and we can afford to run out to the store and buy those pricey egg-whites in a carton things. And this is a restricted diet he needs to be on for a little over two weeks, and then it’s done. So many people with disabilities do not have these options. It’s eat stuff that makes you sick, or don’t eat enough at all.

I wish I had some solution I could offer to this problem, some nice little bow of hope I could tie this post up with. All I have is the knowledge that these restrictive diets aren’t things people are on for fun, but because the alternatives for them are sickness or pain. And yet, the foods people are required to eat are priced like they’re luxuries.

16 thoughts on “Food.

  1. I have an autoimmune disease that’s currently in remission, but when it’s not, I’m SOMETIMES allergic to certain foods. And while these certain foods are actually pretty easy to avoid when I’m shopping for myself, it’s difficult when someone else is providing food and they’re not thinking about dietary restrictions. Even though I’m in remission, I still try to avoid trigger foods (just in case), and I’m always really disappointed when people bring in food for work meetings that I can’t eat.

    And, well, it’s hard to find foods that don’t have corn in them OR soy in them. That’s why Passover gets me frustrated every year!!

  2. I totally hear you. My diet is not particularly restricted as these things go, but it is really important that I eat a really healthy balanced diet, and in particular I have to eat lots of iron, folic acid, and B vitamins.

    Because of pain and fatigue, I very often can’t cook anything that requires much in the way of chopping or washing up. So I often eat ready-meal type food…and that’s really expensive compared to stuff prepared from scratch, especially the healthier options (yeah, but “healthier” is a bit ambiguous here — it’s not exactly healthy to flare up my pain and fatigue by cooking myself a gourmet perfectly balanced meal).

    Slight digression, but not really:

    The other day, I was browsing my local independent bookshop, and caught sight of something like called a “raw food cookbook”. For a moment, I thought “hey, that might be great — no cooking, easy prep, low on washing-up food”. Hahahahaha. Wrong. All the recipes started off with stuff like “take [large amount] nut milk, 5 ripe pomegranates, 2 jicamas, and a ripe papaya …” Oh yeah, like I just happen to have that lying around my student flat in Scotland.

    It’s funny how easy healthy food so often gets framed as something for the non-disabled and super-wealthy. I guess that’s why I blog my One Pot Meal recipes…I can’t always rely on the pre-prepared, and I’ve had to learn shortcuts to make cooking even remotely manageable.

    One day, maybe I’ll write a cookbook, and it will be full of recipes for people with different kinds of restricted diets, that are all easy-ish and cheap-ish to prepare. Just as soon as I have found some recipes.

    Ooooh — maybe we could start a wiki!


  3. I’m lucky enough not to have any food allergies or dietary restrictions, but hunting ingredients lists are familiar to any Jew during Passover, when Ashkenazi can’t eat corn, rice, or “small things,” in addition to the usual wheat, barley, oats, spelt, and rye. In fact, if there is a decent European Jewish population near you, you might find some luck with kosher-for-Passover foods, which are likely on significant mark down. Make sure you’re still checking that they don’t contain wheat matzo, but I know that where they always get me is with the hidden corn syrup.

  4. The cost of these items is especially relevant because so many people with disabilities live near, at, or below the poverty line for their respective countries.

    In Ontario, when you are applying for social assistance, you can apply for extra money if you have food restrictions due to a health condition or a disability—the “Special Diet”. Social assistance amounts are so low that, even with the Special Diet, you still may not be able to afford the food you need—but at least you’ll be able to afford food at all. One in five people on social assistance use this.

    Oh, wait. Did I mention the provincial government just cut that program?

    According to my government, healthy food isn’t a human right, but a luxury. Poor people and PWD have to suck it up so we can reduce our debt and beat the recession, you know!

    Some days there’s not enough rage in the world.

  5. Oh yes, definitely. I have an incredibly restricted diet: no gluten, corn, and dozens of other foods because of the chronic migraines. I’m pretty much on fresh meat, fresh fruits and vegetables, and rice, with little else aside from spices and some condiments. Restaurant food is almost entirely out. When I eat this way, I feel fantastic. Or at least I have enough energy to get through the day. My wallet, on the other hand, does not like this diet, particularly when I’m craving sweets and don’t have the time/energy to make them myself. And I’m lucky enough to live near both a health food store and a supermarket with excellent gluten-free sections.

    I can’t tell you how many times I’ve explained this diet to someone and they say, “Oh, but you must be SO HEALTHY eating like that. Isn’t it a blessing?” Sigh. And if I don’t explain it, I get a lot of people trying to guilt trip me into eating foods that are not on the okay list (usually bready things, fried food, etc) in order to make THEMSELVES feel good about not eating, say, an apple for a snack instead of leftover bacon-wrapped scallops from a work event.

    One last note, I promise: I work in the food service industry, and we occasionally get people who come in with food allergies. The chefs have no problem with it (or if they do, they keep it to themselves). The servers, on the other hand? I hear them say things all the time like, “Why would you even go out to eat with that many food allergies? It’s such a hassle to serve them.” Double sigh. Sometimes the attitudes are worse to deal with than the high expenses.

  6. When I was first diagnosed with MS, I tried a couple of different diets (Swank Diet, Paleolithic Diet), but they were way too difficult to maintain, and didn’t make any difference in how I felt. But I got a LOT of shaming from other people when I stopped restricting myself so severely. “Should you eat that? Aren’t you on that special diet? Is that making you feel better? No? Well, maybe you should try it longer.” Yeahno. Six months is a good long trial.

    It’s also interesting how many people want PWD to cure themselves with their diet, but when you start explaining how expensive and inconvenient the special diet is, they can’t hear you anymore. Sigh.

  7. @Millicent — My best guess is the people who have ideas about curing us with diet aren’t so much interested in helping us with improved health quality of life whatever. They’re seeking validation: They want us to help prove their own diet is so super healthy it can cure (and it’s always cure isn’t it? never manage) disabilities. Not only do they get to feel virtuous about following their own dietary choices and fixing someone broken they get to stave off their fear of becoming disabled or old or dead.

    (Which is not to say @SavvyChristine is wrong — people do that too and sometimes they are the same ones wanting what I said. Folk is complicated.)

  8. Another reason these diets can be so hard is the contradictions in them. This is a problem with the low oxlate diet in particular – I’ve seen different resources & books list the same foods as on either the “okay to eat” list or the “not ok to eat” list. So depending on who you ask, a food is either high or low in oxlates or things that will produce oxlates… So who do you trust?

    And then, do you remember a few weeks ago about nutritional recommendations are sort of a best guess? Well it’s like that too. Low oxlate diet has been aroud for awhile but I recently read a study suggesting it’s not worth it. It’s not the best for nutrition & in practice it’s not frequently effective…

    Similar with anti-yeast diets. Lots of veggies, very little sugars, long-term, hard to maintain. I tried one for a short while (like 2 weeks) and after awhile I just, it wasn’t worth it.

  9. The really frustrating part is that it probably is okay for him to eat some of that salty prepared food anyway – you just don’t know which kinds – because many manufacturers stopped using iodine-enhanced salt years ago. Now they use bromide instead, because it’s cheaper, which results in iodine deficiency, and thyroid dysfunction, hence my need for expensive iodine supplements and new-found sushi-making abilities.

    But there is no way of knowing which food has iodine in it and which doesn’t, because the nutrition labels don’t include that sort of (entirely necessary) information.

    And I hear you on the expense of “special” food. Whenever my IBS flares the food bills spike. Not to mention the time it takes to make trips to several different stores to find the right unsweetened almond milk etc.

  10. @kaninchenzero: I think you’re exactly right. I know many TAB people who are convinced that their health is due to all the awesome perfect things they are doing. Eating the exact right things, doing the exact right exercise — that’s making them healthy, because they’re so awesome! And it’s very scary for some folks to think that maybe they too could be disabled, so they try to fend off that scary scary thought with exhortations about the right diet, and the right exercise, to convince themselves that disability could never happen to them. So annoying. And sad, too, but mostly annoying.

  11. The people who think that doing the “right” thing will help them be healthy remind me of Homer and the rock that keeps away tigers.

    Homer: Not a bear in sight. The Bear Patrol must be working like a
    Lisa: That’s spacious reasoning, Dad.
    Homer: Thank you, dear.
    Lisa: By your logic I could claim that this rock keeps tigers away.
    Homer: Oh, how does it work?
    Lisa: It doesn’t work.
    Homer: Uh-huh.
    Lisa: It’s just a stupid rock.
    Homer: Uh-huh.
    Lisa: But I don’t see any tigers around, do you?
    [Homer thinks of this, then pulls out some money]
    Homer: Lisa, I want to buy your rock.
    [Lisa refuses at first, then takes the exchange]

    My sister must do something to explain her relatively good health. Oh, I got it. She doesn’t read for fun as much as I do. It’s like they said in the old days, reading is bad for women. (It makes your uterus atrophy, and since I have pain there, duh! No more reading for me!)

    Right now, my pain is good, so I can seriously feel grateful that no one has decided my pain is caused by a certain food, and feel sorry for those who do have to navigate the hell of food allergies. (Corn is in everything! Wheat in Twizzlers?!)

    A little more OT, and delete this if you want Anna, but I did the iodine dye thing for my thyroid and I don’t remember having to be iodine free for 2 weeks before. I don’t remember having to do anything before taking the nuclear pill. (The nurses were all protected in lead and the like and they’re like, here, put this in your body.) Then a few days later, they took pictures of my thyroid with a dye. Iodine was involved somewhere.
    There were plenty of restrictions after taking the pill, but nothing dietary related – my sister had to leave the house, I couldn’t leave the house, that sort of thing.

  12. D’oh! That last paragraph could be interpreted (depending on mood and a zillion other things) as if I’m like, “My experience was different, so you must be lying.”

    That’s not it at all, I’m just curious about the differences. Of course, they may have to do with age (I was 14), gender, and the fact that at the time, my thyroid was the only thing wrong in my body. Or the fact that his endocrinologist is taking a different route in treatment…

    Curiosity – just comparing procedures, like the stereotype of “old” people. “Oh your replacement hip is titanium? Well mine is made of gold!”

  13. Oh man, so many vibes headed to you both. Restricted diets stink like icky stinky things of ickiness. — especially when combined with being unable to do much. I have some crock pot recipes that might work , if you have one and want them (but they’re all pretty much just Put stuff in pot. Leave it on overnight or all day. Eat. Stick leftovers in icebox. Repeat as needed.)


  14. Yep, I have a friend who feels much much worse when she eats wheat, but she relies on food pantries for food due to low income, and what do the food pantries give out lots and lots of?? Bread. So much freaking bread. And pasta and such-like, as well.
    And another friend who has been told that going off of wheat for just a month would significantly reduce some of her symptoms, but she literally cannot afford to buy wheat-free foods.

    I have some food sensitivities which I am privileged enough to be able to just ignore and deal with the minor consequences of, but I do *choose* to be a vegetarian-going-vegan. However, I myself will soon be relying on food pantries (this is disability related because the reason I need to do this, the reason I am low income, is because of my disabilities) and am worried about finding enough vegetarian and vegan foods that I can eat. Not to mention my ability to actually cook myself meals varies a lot and if mostly what I can find that’s veggie to eat from pantries is ingredients to cook with instead of prepared meals, then … wow that’s going to suck on bad days.

    I’ve been fortunate until recently to be sharing in someone else’s income and have been able to afford to get my food from the fancy local food co-op which has tons of organic, natural, local, fair-trade, vegetarian, and vegan food options of all kinds including deli foods and frozen foods and canned foods, etc. My life is about to drastically change and it scares me. I know the good quality food I’ve been able to eat has helped my physical health issues, and I’ll be losing that.

    Yes, eating vegetarian is a choice. But it’s one I can’t imagine going back on for all kinds of ethical, political, and health reasons. The going-vegan part I may have to say goodbye to, though, at least during bad spells when I can’t cook for myself and a frozen pizza is my best option.

  15. My mom has a gluten allergy and avoids gluten for the most part, and I probably should be trying it to deal with my depression, but the combined stress of the bigger price and the extra time spent preparing food keeps me from it. I usually eat quickly prepared or pre-prepared food because of chronic fatigue, and because they’re generally cheaper, especially since I live alone. It’s a depressing catch-22, I could be healthier and have more energy if I went gluten free, but I can’t try because I don’t have the energy now. Of course, there’s very little to fix with the price, so I guess it’s a null point.

  16. Although I have enough class privilege that the money isn’t a problem for me, I can identify with other parts of this post.

    It’s quite clear that I have some form of food intolerance – I suspect lactose intolerance, but I can’t be certain (it might be something else – my aunt has fructose malabsorption, for instance). I haven’t got tested for this, nor do I plan to, nor do I plan to do anything to find out what exactly it is. Because whatever it is it’s clear that it’s something I eat a lot, and I simply cannot afford to go to the effort that cutting anything that’s in a lot of the things I eat out of my diet would take. Spoonwise, that is. Food is a huge problem for me already wrt spoons and I have to be able to eat things like frozen pizza and ready meals and all the other fun stuff like that because it’s often the only thing I can manage. And if I cut whatever-it-is out when I’m well enough to have the spoons necessary to manage something else, my sensitivity will probably increase and I’ll feel even worse when I do have to eat it. And, hell, just knowing what whatever-it-is is will probably make me feel worse when I eat it thanks to nocebo.

    So I just go on as I am right now and feel very lucky that I *can* afford to ignore it because I won’t die or get dreadfully ill but only have assorted stomach issues and (via an interestingly convoluted chain of causation) reduced lung volume I end up having to regularly take meds for. And regular awful stomachaches and only having half the lung capacity I should and various TMI things are a small price to pay for being able to eat semiregularly.

    …which is really messed up.

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