Tag: HAES

Read Part 1 and Part 2

Nourishment vs Nutrition

To finish up this series, I want to think about what it means to be nourished. I think “nutrition” can sometimes feel a bit cold as a concept. Nutrition is important, but it is so wrapped up in diet culture that I find it hard to engage with. It doesn’t have to be, but it is. Nutrition was a transitional concept for me as I moved out of dieting and focused “nutrition” as opposed to calories.

But, as I’ve been going through my chronic illness process, I’ve found myself shifting in my thinking away from nutrition and toward nourishment. Here is an example of what I’m getting at: During flares, I am often so fatigued that I cannot prepare food. I mean, like even a little bit of food prep is more than I can manage. 9-10 months ago I went through a period when I just wasn’t eating at all during the day because I was too tired to make food. I’d wait for my partner to get home and then eat whatever she prepared for dinner. I just got weaker and more fatigued.

One day my partner came home with a whole bunch of “convenience” food that met my food requirements. It was easy stuff I could microwave or eat cold. And, it included breakfast, lunch, and dinner. It was not how I prefer to eat. But, it was food and that’s what mattered. After a week of eating three squares a day, low and behold, I felt a bit better! And, because I was nourished, I had more energy to make the food I’d rather be eating. It was a light bulb moment for me about the vicious cycle of a flare. Without some nourishment, I couldn’t get out of it.

From a nutrition standpoint, that “flare food” wasn’t great. From a nourishment perspective, it was exactly what I needed. When I’m flaring, I just need to eat–yes, it needs to be food that is not going to make me worse, but it doesn’t need to be perfect nutrition, just something that nourishes. I have to admit that part of what was driving my not eating, in addition to fatigue and nausea, was the pursuit of perfection. IF I had had more energy, I would have eaten. But, I couldn’t think of low-prep foods that met my food plan and had complete/balanced nutrition. So, I just didn’t eat. Since that time, I’ve come to shift my focus from nutrition to nourishment. I make sure to have some low prep items on hand at home in case of a flare–regardless of if they are the most nutritionally complete foods. That way I can nourish myself until I feel better and can think about nutrition again. I also saw a non-diet nutritionist who helped me brainstorm some meals that fit my food plan but that don’t take much of energy to make.

This shift has also helped me think more expansively about nourishing my body. Nourishment gets me back to functionality and helps me do the things I want to do. In this sense, my physical therapy “nourishes” me–though it isn’t food. And, the Great British Baking Show “nourishes” me, though I don’t eat anything they make! 🙂 Moreover, thinking about nourishment instead of nutrition allows me to integrate how I think about my mental and physical health. It also encourages me to focus on meeting my basic needs first, rather than always striving for perfection.

As a result of this shift toward “nourishment,” I’m working on prioritizing the things that fill me up, give me energy, and help me feel and function better. I’m trying to avoid the impossible pursuit of perfection which seduces us with the idea that perfect adherence to the “rules” is the only guarantee of improved function and well-being. Being nourished requires letting go of perfection and getting in touch with my intuition and my body. It requires me to actually listen and observe how my body feels in response to the world around me and in me, rather than simply “follow a plan.” It requires me to give as much weight to my mental health as I do to my physical health. And, it turns out, that food is just a small part of being nourished.

I want to leave you with some final remarks about the question at the heart of this series: Is this a diet? It is so tricky for folks to navigate using food to manage chronic illness under a Health at Every Size paradigm. Watch yourself for the warning signs I outlined in part two. I would also suggest that if your food plan is not focused on weight, is tailored to your unique nutritional needs, does not revolve around forbidden foods, and prioritizes holistic nourishment over perfection, you are not on a diet. But, it takes constant work to keep your food plan from slipping into dieting and disordered eating territory in this cultural environment. As much I have tried, I admit I have flirted with danger in the 18 months since I made my food changes. I think it can be worthwhile for those of us with chronic illnesses to walk that tight rope. But it can only help to put together a support team you can check in with regularly. I suggest a non-diet nutritionist, a therapist, and supportive friend or family member. If you are in recovery from an eating disorder, that support network is an absolute must. Let me know how you navigate managing illness with food using a Health at Every Size paradigm in the comments!

Read Part 1

The Impossible Pursuit of Perfection

One thing I worried about when I started to change my eating was becoming obsessive about food. I have a history of that. Not full blown eating disorder-level. But I have to watch myself. I know I have the capacity to get to a really disordered place. So, I wanted to know how to incorporate food changes for managing chronic illness with a Health at Every Size approach. Unfortunately, I couldn’t find much out there to help guide me (hence this series). Most of what I found wasn’t really geared toward people with serious chronic illness. I did listen to a podcast over at Food Psych about elimination diets and eating disorders. What I took away from it is that I should be cautious about expanding my elimination beyond my initial targets and that I needed to watch myself for the pursuit of some kind of “perfect” diet and “perfect” symptom control. That is, elimination diets in chronic illness can lead to orthorexia.

I also knew from my HAES reading that another disordered pattern of perfectionist thinking I needed to avoid was “good food”/”bad food” thinking. For example, my food changes needed to resist the idea that the foods I don’t eat are “bad” foods. Cheese is not a bad food. It is a delicious and nutritious food for many people. It is an excellent way of preserving dairy for consumption at a later date. Cheese is the shiz! Cheese isn’t bad. My body isn’t bad. They just don’t play well together. For people who aren’t already dealing with a lot of inflammation, cheese probably doesn’t give them much trouble. For me, shucks, I’ll elect to get my salty-creamy-goodness from something else (like cashews).

As an adjunct to this idea, I also knew that I needed to avoid attaching a moral value to my new food plan. I needed to not see myself as engaged in some kind of morally superior pursuit of health. Wow, it is hard not to get seduced back into this one, especially when food moralizing is all around us! For example, at a work buffet luncheon, I was chatting with a colleague I don’t know well. As we got closer to the food, I got excited because they had labeled the food clearly so I knew what food met my eating plan. I explained my excitement to my coworker who replied, “Good for you! You are so healthy. I should cut [x food], too.” She had no idea how sick I actually was (hello invisible illness!). There might have been a tinge of over-congratulating me because of my size, too.

At a different time in my life, I would have swelled with pride at the moral goodness of my food choices. This time I let her know that I wouldn’t have cut out such a key food without a serious reason, hoping to subtly demonstrate I didn’t share her moral stance on food. It was important for me to express that to avoid internalizing her praise. Avoiding good food/bad food moralizing is important for another reason. It helps keep me active in my food choice. What I mean is, resisting moralizing helps me remember that I am choosing to eat differently for a purpose–better function. I am not obligated to eat differently because it is “right” or “good” or “correct.” For me, this helps keep me out of orthorexia-land.

So much of disordered eating relates to perfectionism. The trick about eating for chronic illness is that we have yet another entry point to disordered thinking–the pursuit of perfect control of our illnesses. This is something I find myself seduced by even with respect to supplements. But deep down, I know it isn’t possible. Perfect control of a chronic illness is unrealistic. There will be flares. Even before I was fully diagnosed, I knew this from my experience with asthma. Not even the most perfect medication can prevent every flare. So, I try to keep that in mind about my food and supplement choices. It is a fine line to walk. Especially when I’m feeling poorly and I need to be extra careful about what I eat.

Experimental Attitude

What all this means for me now is that I periodically re-challenge foods I’ve eliminated. I am working on several things to improve my body’s function and I have made a lot of progress! My migraines are happening only about once every couple of months. And usually when I have one there is a very clear trigger. The body changes and even heals, sometimes! It may be that I can reintroduce some foods over time. I won’t know unless I try. And that will mean a few flares I bring on myself. It’s all an experiment! Maintaining an experimental attitude helps me to avoid becoming fixed and stuck in my eating plan.

I want to take a minute to acknowledge that this kind of experimentation applies nicely to food “sensitivities.” It doesn’t work so well for those who experience anaphylaxis (whether due to IgE mediate allergies or MCAS). For those folks, strictness is important. But, as Allergy Girl Eats writer, Kortney discusses, the fear of anaphylaxis can also hide eating disorders. I hope she and others write more about the intersection of eating disorders/disordered eating and illness that require strict management of food (such as allergy, celiac, and diabetes).

As I’ve continued on this journey, I have seen so very many food plans (some are truly diets) promoted as cures to whatever ails us: Keto, autoimmune protocol, FODMAPS, low histamine, low tyramine, etc. I do not doubt for a minute that food is important to managing illness. And, many folks have had good luck with some of these food plans. But I worry that often times we position food as the enemy. That’s easy to do, especially for folks with anaphylactic reactions or with gastroparesis. So much of the advice out there is about what not to eat. I think in our pursuit of perfect symptom management sometimes we run the risk of forgetting that we need proper nutrition–most especially if we are unwell. In the pursuit of perfect control, we can throw the nutritional baby out with the bath water. On the other hand, for some folks, perfect nutrition will never be possible because of the limitations of their illness.

Perfection of any kind is a pipe dream. Continuous experimentation helps keep me in a fluid place, but it can feed into a quest for perfection as you’ll see below. Caution is warranted!

Warning Signs

Several months ago, I talked with my nutritionist and naturopath about the low histamine diet. They both discouraged me from strictly following it because they felt that benefits to MCAS control would not outweigh the nutritional deficiencies of the diet. I also mentioned the idea to my therapist and she exclaimed, “You can’t go on a diet. You are already on a diet!”

The comment struck me. Was I on a diet? I didn’t mean to be on one! I think she meant it as joking comment–as a way to acknowledge that my food plan is challenging enough as it is. And she’s right! But it got me thinking: If you, like me, are a recovering dieter finding themselves pulled back into the world of restrictive eating, it can be overwhelming to figure out what is a “diet” and what is a food plan that might help you feel better.

In my case, my MCAS has been fairly well controlled by the food changes I’ve already made and my medications/supplement regimen. Experimenting with low histamine–for me–would be pursuing perfection. AND, it would further reduce variety which is not nutritionally wise, nor does it facilitate “normal” eating. That’s the red flag. I decided to follow my team’s advice. Not only is a low histamine diet unlikely to give me much greater benefit, I think the toll on my mental health would be too heavy. I need to think holistically about what is healthy for me. That includes my mental health. More food changes, reduced variety, and less nutrition isn’t going to do me any favors physically or mentally.

I think it can help folks like me to know what the warning signs of disordered eating are. There is a lot out there about this, but this list is geared toward the context of chronic illness. Watch for this in your food plan–either intrinsically, or in the way you implement it:

• “Good” / “Bad” food or moralistic thinking
• Eliminations without challenges (except for anaphylaxis, celiac, diabetes, etc)
• Pursuit of total symptom control
• Requiring perfect adherence to the plan (except for anaphylaxis, celiac, diabetes, etc)
• All food, all the time: Obsessive thinking about food outside of mealtimes/meal planning
• Weight-focused rather than well-being focused
• Privileging physical health over mental health or seeing them as separate
• Discouraging intuitive eating

Because I tend to be a visual thinker, I made this flow chart to help. Let’s call it a draft. I am certain it is missing something–let me know in the comments. If you are wondering if your food plan might be a diet in disguise, give it a try.

The point is that we always have to be careful! Pay attention to your goals and thoughts about food as you alter you food plan in the pursuit of better functioning. Watch for the warning signs. Whether the fault is in the “plan” itself or in our approach to it, we don’t make food changes in a vacuum, but in the context of a toxic diet culture. That means, if we are prone to perfectionism we run the risk of sliding into disordered patterns of behavior. If you are recovering from an eating disorder, you must be especially careful and work with your support team to monitor your implementation of any food changes.

I suspect that those of us with EDS/MCAS/dysautonomia are particularly prone to disordered patterns as our conditions often increase our fight/flight response. The pursuit of perfectionism can result from our pain and desperation and it can also become a coping mechanism for modulating our elevated adrenaline–a maladaptive way of self-soothing. The challenge is to find other ways, self-compassion, trust, and perhaps medication (whether for POTS or for anxiety/depression) to regulate our fight/flight response rather than self-destructive patterns. NOT any easy task!

In part three I will discuss the shift I have made toward thinking about nourishment in a holistic sense to counter the pursuit of perfection. Watch this space!

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!

Desperation

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!