Before I really break into this post, I want to make one thing very clear: one of the most common microaggressions disabled people face is other people giving them unsolicited medical advice. DO NOT DO THIS, it is rude. Yes, most of it's well-meaning, but often the implication is that you don't know enough about your own illness, that you don't know your own body, and that you're not trying hard enough to get better.
Furthermore, being told about someone's aunt's cousin's friend who got 100% better after trying this "magic water" can be very hurtful for chronically ill people--because there is no such thing as a cure. Many chronically ill people, like myself, suffer from disorders that do not go away. Ever. All you can do is manage the symptoms the best you can. We have to deal with that fact, and having people come up to us all the time insisting that an impossible hope exists just causes us more pain. It makes it harder to accept the truth. It also makes us feel like the person suggesting a cure doesn't believe us, which is a huge problem that chronically ill people face in society.
All of that is on top of the fact that, a lot of the time, these cures are scams that might even be extremely damaging to our health.
"But Kira!" you say. "It's not a scam! My aunt's cousin's friend really did get cured by this magic water!"
DOESN'T MATTER. Unless we specifically ask for your thoughts on treating one of our conditions, DO NOT OFFER US MEDICAL ADVICE. We know plenty well what's been tried and proven to the point of actually being officially recommended, either by the medical field or by trusted condition-specific websites. The rest of it, we (at least the majority of us) don't want to know about. Why? See the above reasons. If your aunt's cousin's friend really was cured by whatever this magic cure is, then it's probable they didn't actually have the condition in the first place. It was probably something different that resolved on its own, by lucky accident, or even just through the placebo effect. Even if they did have the condition, different bodies react differently. It's possible they had a much more minor version of the condition. And, if this "cure" hasn't been shown to work on enough people to be included in the trusted literature, it's also possible your aunt's cousin's friend is one of a very few whose body reacted in that way.
So. To sum up: do most disabled/chronically ill people want to know about your magic cures and other medical theories? No, we don't. Most of us don't think it's worth the risk to mess with stuff that isn't commonly trusted. If we want to take a risk, we will ask someone we trust ourselves. DO. NOT. OFFER. UNSOLICITED MEDICAL ADVICE. ESPECIALLY. TO. DISABLED/CHRONICALLY ILL PEOPLE.
Okay. With that out of the way, I am here to talk to you about something that is a struggle for many chronically ill people: eating. Why does this relate to the above mini-rant? Because, dear friends, the most common unsolicited medical advice we get is about exactly this. I have been given advice on how eating "more healthy" or in some other different way will magically cure me over and over again. The majority of this advice has fallen into two categories: 1) Eat gluten-free and 2) Eat more vegetables.
No one ever told me not to eat corn.
Honestly, I think it's hilarious that the things that have been recommended to me in the past have often turned out to be counterproductive. Like when I was told to drink cranberry juice to help with the bladder pain--and then the pain turned out to be interstitial cystitis, which is worsened by cranberries, along with about a billion other food ingredients. Or when I'm told to eat more vegetables--and then it turns out that not only do many vegetables worsen interstitial cystitis, but that I am, in fact, corn intolerant.
For the past two months, I've been working with one of my doctors on tackling my digestive problems and what I've found is that diet can be really complicated when you're chronically ill. Like most things, it's usually not as simple as going gluten-free. I tried going gluten-free, actually, in 2012. I did it for about a year, and it was an incredible nuisance. It also had little to no impact on my symptoms, so I ended up dropping it. Little did I know that my diet was going to become much more complicated and much more of an annoyance than the gluten-free life had been.
When I was diagnosed with interstitial cystitis this past year, one of the first actions I took was to eliminate all the foods that can potentially worsen the condition, as noted in the middle and righthand columns of this chart. In interstitial cystitis, the lining of the bladder is damaged or missing, so particles from the food and drink you ingest can basically tear up your bladder wall. For some people with IC, just eliminating the big baddies (tomatoes, soy, citrus fruits, and chocolate) is enough. Unfortunately, my case is a relatively severe one, and, at the present time, if I eat any of the possibly damaging foods, my already severe pelvic pain becomes unbearable.
If you look at that chart, you'll see that this cuts out an awful lot of foods. It was a huge adjustment. I had to go from never really thinking about what I ate to carefully examining the labels on everything for any potentially harmful ingredients--and yeah, most prepackaged foods have those ingredients. Nowadays my mom shops a lot at organic food stores.
Then my doctor decided that, since she and the others are unable to tackle the more pressing issues I face right now, we would focus on my digestive symptoms. I've had digestive upset about as long as I've had fibromyalgia, which is part of why I went gluten-free for a while. I was diagnosed as having IBS-M. Those symptoms never seemed to matter that much to me, though, especially once the tremors and lack of balance and muscle weakness and all the other awful things I'm dealing with now appeared.
First, the doctor had me undergo an antibiotic treatment for small intestinal bacterial overgrowth (SIBO). While doing this initial treatment, I had to follow the specific carbohydrate diet--meaning, I could eat almost no carbs. This was like torture for me, because, like most fibromyalgia patients, I have a lot of carb cravings. I was grumpy and headachy and sick. By the end, however, my digestive symptoms had all but disappeared.
Then I started adding carbs back into my diet again. It's taken a while, but through various experiments and eliminations, I've discovered that I am both corn and lactose intolerant, and, to a lesser extent, also react badly to oats.
Following the IC diet was already much more difficult than going gluten-free, and you can imagine the strain that this adds. Luckily, I'm not also gluten intolerant. If I were, it'd be nearly impossible to get any kind of bread-type food, because gluten-free products usually have corn in them! I'm also not as sensitive as some people, which means that so far, I only have to avoid ingredients that actually have the words "corn" or "maize" in them.
I also have a bigger incentive to follow these diet rules than I did the gluten-free diet--because I'm actually seeing results. It's not huge. Going corn-free and taking lactaid with dairy isn't a magic cure, or anything close to one. But it is the most progress I've seen in terms of my physical condition in years. My digestion is much improved, although I still have to be careful not to eat too much of any one thing. My muscles aren't as tight, which means that I can breathe easier--something I didn't even realize I was having trouble with. Most notably, the bad tension headache I've had since 2005 has eased up, which is a definite relief.
I still have severe pain all over, especially in the bladder region. I have whiteouts every time I stand up. I can't remain standing for more than a couple of minutes. My muscles are stiff and weak, I have a skewed sense of balance, and I have tremors once or twice a day. Those are just the worst of the symptoms. I'm exhausted, guys. I'm very sick.
So this progress isn't huge. It is NOT a miracle cure. But it is something. I'm glad that I know now what I can and can't eat if I want to avoid even more severe symptoms.
Still, it does cause a lot of annoyance. I feel ashamed, a lot, of how "picky" I have to be in order to take care of myself. I've always been the kind of person who makes fun of those who go organic. Like, the image I get when I think of organic food is some super privileged white mother who speaks in a nasally voice about the evils of vaccines and GMOs. So eating the way that I do makes me feel kind of like that person, which I don't like. But the fact is, while many organic proponents are annoying rich white people, some of us are also genuinely sick and have no other options.
In fact, people who tend to be snobs about "healthy eating" often target chronically ill people online, as an extension of the microaggression I discussed earlier. I can't even tell you how many times I've seen Twitter arguments between my fellow spoonies and able-bodied vegans who insist that anyone can go vegan if that want to. This is a categoric lie entrenched in privilege. Due to the very limited nature of my diet, I could never go vegan or vegetarian. It's simply not possible. And my diet isn't even the worst that there is. Additionally, I'm dealing with excess copper levels in my blood, which means that a vegetarian diet would be a bad idea even if I could maintain it.
Another reason that living on a limited diet is difficult is because food is a really social thing. At the moment, I'm too sick to go to social activities, but I worry that when I'm well enough, it'll be rough. I mean, I know people are going to offer me food that I can't eat, a lot, which is going to make me sad, and I don't want to seem rude when I refuse. I also worry about dating, because a lot of the time it involves going out to eat a meal. This is extra true when you're too sick to do things like hiking or swimming or the like. Luckily, there are still a couple places in town that I can get a very basic meal, so that's something. Still, it's a bit awkward all around.
More than anything, I really, really miss being able to eat all the foods I love.
In basis, eating when you're chronically ill can be difficult and complicated, not in the least because of the way that people judge us. Nonetheless, I'm glad my doctor and I were able to figure out a way for me to eat that helps me be just a teensy bit less sick. I look forward to visiting MayoClinic at the end of July and finding out what they have to say about the rest of my symptoms. Maybe soon I'll be able to get more of my life back, like going to church on a regular basis.
Thanks for reading! I'll be back Tuesday.
Images via brianwinslowblog.wordpress.com and epidemicanswers.org.
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