Health at Every Size and Chronic Illness
I’ve been thinking a lot about nutrition and nourishment. I want to share some of those thoughts with you, particularly because a year and a half ago I was looking for resources about how to use food to manage a chronic illness under the health at every size paradigm but couldn’t find them. This will be a three part series that describes how I bumbled my way through this process. I don’t claim to have it all figured out, but I can share what’s worked for me and the places that tripped me up. Take what’s useful to you; leave the rest
In this post, I want to lay some ground work. First, let me define what I mean by a “diet.” In this context when I use the word “diet,” I mean not the variety of the things we eat, but instead the act of restricting our food intake for the purpose of weight loss. I also want to say a bit about what I mean by “disordered eating,” which is different from, but related to, a diagnosable “eating disorder.” Here it might be useful to think about the opposite of “disordered eating”–“orderly” eating (usually called “normal eating” or “competent eating”). I draw from the National Eating Disorders Association’s definition: “Normalized, non-disordered eating is when one mindfully consumes food when hungry and is able to stop when full. Additionally, they incorporate variety into their diet.” But, is dieting necessarily disordered? I would argue that by the definition of normal eating above, dieting is inherently disordered. What’s more, research shows that many dieters progress into pathological dieting and some into full blown eating disorders. Many more dieters may never meet the diagnostic criteria, but are clearly not normal eaters.
As I contemplated changing how I eat to manage my illness, I knew I did not want to go on a diet in the sense of restriction, but I did want to identify possible food triggers for my migraines and use food and nutrition to manage my illness. I knew I wanted to find a way to continue to aspire to normal eating (I don’t think I’m really there yet). To be honest, one of the effects of learning more about the science of weight was that I became fearful of loosing weight because I continued to be fearful of gaining weight (weight cycling). I’m still working through this (the fear part). At any rate, I had a suspicion that food was a trigger for me, but I didn’t want to restrict, loose weight, and then gain it back again, even if my goal this time wasn’t weight loss. Nor did I want to trigger a backslide into a disordered relationship with food. Lots of feels, much tricky!
Let me back up and tell you a bit about how I got to the point of tinkering with food. In the summer before school started in 2017, I knew things were going to get worse as soon as I went back to work. In mid-august I had what I later learned was an Alice in Wonderland migraine and it freaked me out. At the time, I thought it was a panic attack. That episode was a major turning point for me. I had been seeing specialists about vertigo and dizziness for some time, but I hadn’t gotten a diagnosis yet and I decided something just had to be done.
I was right that things were going to get worse. At my lowest point, I was struggling with migraines 3-4 times a week. I was teaching three preps, working on two articles, and compiling my tenure dossier. Juggling an academic career and an undiagnosed illness was like … holding on for dear life, white-knuckling my way through each day, only to come home to collapse into an attack. These included light and sound sensitivity, whole-body pain attacks, nausea, dizziness, vertigo, aphasia, allodynia, and mild dystonia … the works. It was intense, to say the least.
Though I usually made it through the day, on some occasions I had to have a coworker drive me home as soon as I finished teaching. Once, I had an attack while teaching! I tried to keep it together (dumb). By the end of the 75 minutes I looked up to see lines of shaky chicken scratch zigzagging across the board, littered with misspellings and half words. Eventually, I had to explain to my students what was going on. I was worried they would call my chair and tell her I was drunk. This was the desperation, the fear of loosing the career I had worked so hard for, that led me to talk with my wonderful doctor about migraine diets. I also started taking a medication that is used to treat both vestibular migraines and anxiety. I was not messing around any more. Of course, now I understand what was going on was only partly migraine. It was a combination of MCAS and dysautonomia driving migraine and other symptoms.
But, I hadn’t even heard about MCAS or EDS, yet. I had seen many folks in the vestibular migraine forums advocate various food plans for migraine and I wanted to know what my doctor thought. She was dubious. But not because she doesn’t know much about food and nutrition. Quite the opposite; she’s a naturopath. She felt that a migraine diet that simply eliminated a whole host of foods because they are possible migraine triggers without knowing what my specific triggers are, would be like throwing darts in the dark and hoping to hit the bullseye. And, she worried that such a restrictive plan could eliminate important sources of nutrition from my diet.
Instead we did an IgG food sensitivities test and an elimination/challenge based on the foods that the test indicated might be problematic for me. This process led me to cut SOME of the foods a migraine diet would have asked me to eliminate (cheese, for example), but it allowed me to retain other foods (coffee!!!!). The key point here was the challenge portion of the process. IgG food sensitivity testing isn’t without controversy. Eliminating foods without a subsequent challenge based on such a test probably isn’t a good idea because it limits the diversity of your nutrition. Doing a challenge after elimination allows you to determine if the food is actually causing problems or if it is an artifact of the test. In my case, it turned out all the foods I eliminated were actually causing symptoms for me.
However, the dietary changes I made were not a miracle cure for my migraines or dizziness and vertigo (or MCAS/dysautonomia, as I would later find out). But, I could tell that the food changes were helping. I went from 3-4 migraines a week to one per week. That was a significant reduction, but migraines were still a major part of daily life. I also lost a lot of inflammation around my body. My feet didn’t look like my feet anymore! I could feel my tissues relax and become more pliable. But, the persistence of my pain and migraines after such a huge dietary change was part of what led me to suspect there was more going on for me. In my case, dietary changes were not a panacea. My migraines were MCAS driven and I was still not properly medicated at that point. Food can certainly be an MCAS trigger, but so can just about everything else!
The story of my food changes is rooted in desperation to feel and function better, not to loose weight. This may or may not be true for others. Regardless of the way you came to managing your chronic illness with food, I hope you consider using a Health at Every Size/Intuitive Eating paradigm to avoid the pitfalls of disordered patterns that can accompany health struggles like mine. In the next part of this series I will discuss the way this desperation can trigger perfectionism and lead to disordered patterns of eating. I will also attempt to clarify difference between a restrictive diet and a food plan for increased function. Stay tuned!