How Does One Navigate Eating When Many Foods Make You Sick?

What I’ve learned over 2 decades eating with chronic illness

This article is part 2, where I talk about what I’ve learned. In part 1, I talk about how important it is to let go of the toxic beliefs of diet culture when navigating eating choices. I also discuss how I don’t have the negative feelings around food as I once did, nor do I feel anymore like I’m “restricting” my food — instead I feel like I’m making choices that support my physical and emotional health.

What have I learned over 2 decades (and am still learning)?

Flares take a greater toll on me than not eating foods I love.

Over the years, the upset and frustration that used to overwhelm me around my diet has been slowly shifting to acceptance and peace. There are occasionally still times when feelings of anger or sadness toward my way of eating negatively impact my mental health, but at the same time, being so intentional about my food choices greatly reduces my flares and gives me a better quality of life, which allows me to hold a job and support myself.

For me, being bedridden from flares, or having to leave a social event early because I’m now sick after eating something there, takes a bigger toll on my mental health than feeling deprived by my way of eating. So I typically don’t stray from my way of eating, and instead look for ways to cope with any feelings that limiting my food choices brings me. The harsh reality is that most foods cause me some kind of symptom. It sucks, it’s not fair, but after 20 years of this, I doubt it will ever change. So I’ve been exploring how to let go of my anger at the injustice of it and instead be at peace with the way I choose to eat. Because I don’t want to feel deprived every time I say no to a cookie or cheese. But I also don’t want to eat a cookie or cheese because I hate how ill I feel after.

In an ideal world, I’d eat whatever I want and not feel sick from it. But that isn’t my reality. So I want to not eat the cookie or cheese so that I feel my best physically, and be okay mentally with the fact that I don’t eat those foods. While it once felt impossible to be okay with not eating certain foods I wanted, I now feel at peace about it.

For me, food = food, and nothing more.

This is a hard one. As humans, food is more than food for us — food is pleasure, comfort, entertainment, nostalgia, celebration. This is a normal part of eating. But this is also part of what makes changing our way of eating so hard: not only is food everywhere all around us (often making it hard to avoid the temptation of foods we don’t want to eat), but food has a lot of meaning for us both individually and culturally.

I’m learning to see food as a substance my body needs for energy, and not as a source of anything else. I still enjoy the flavors of the food I eat, and over time my taste buds have changed and now appreciate more simple flavors. So what I mean by this isn’t that I don’t care about how my food tastes or that I force myself to eat food I dislike (I don’t do that), but rather, when I want food to give me a feeling or accompany me during a specific moment (like a celebration or a breakup), I look for that feeling elsewhere. For pleasure, I may rub my feet; for comfort, I hug my cat. I invite friends to take a walk with me instead of grabbing a coffee to catch up. To celebrate my birthday, I go biking or indulge in an interesting audio book instead of getting a cake. This way, I can still have plenty of moments of joy and comfort, but they aren’t ruined by getting sick soon after partaking in them, which is what happens when I use food for that purpose.

And in this way, apart from when my stomach is rumbling and I’m about to prepare a meal, I don’t think about food at all, which I find very freeing.

No matter what I eat, I will have flares.

It took me a long time to realize that it’s not my fault I’m sick and I don’t need to judge how I take care of myself. I’m doing the best I can. I’m not sick because I “lacked willpower” and ate X food. I’m sick because I have multiple chronic illnesses — not because I’m weak and a failure. Even with the “perfect” (doesn’t exist) way of eating, I will still have flares, because I have multiple food intolerances due to chronic illness. So I don’t need to be disappointed in myself or feel guilty for my food choices.

I’ve stopped looking at food as my enemy, and instead see it as my partner in feeling my best. For years, when I ate I was concerned with the flare it would bring, and eating was about “How can I prevent a flare?”.

Those aren’t my thoughts anymore around eating, because it’s impossible to prevent all flares and that mindset led me to fear of food and disordered eating. My goal now is to feel my best: which means nourishing myself, having a healthy relationship with food, and putting in habits that promote health and lower the general severity/frequency of my flares.

Now I ask myself, “What can I eat that will help me feel my best — both physically and emotionally? What food is the best choice for me in this moment?” Sometimes that looks like avoiding a certain food completely. Sometimes that looks like adding in more protein. Sometimes that looks like just focusing on getting something in my body on a day when my nausea is really bad (rather than eating anything healthful). Occasionally, that looks like having a small portion of a food I love (but don’t normally eat) in a controlled environment, such as at my home on the weekend. This way, if it makes me flare, I won’t miss work or have a flare in public. Also, I never force myself to eat anything which I don’t like the taste of either. I may only see my food as fuel on most days, but I still look for recipes and ways to make it delicious.

Finding peace with my flares has helped my relationship with food.

I used to have a lot of anxiety and fear around eating, but I don’t anymore. I realized that I wasn’t afraid of eating — I was afraid of the flare that eating would cause. It has been a long process to accept that I’m chronically ill, to understand that I will likely always have days that I’m bedridden or in pain. To accept that food is my biggest trigger and eating often comes with symptoms — and that’s okay. To understand that trying for a lower baseline of symptoms is more realistic and achievable than hoping to never feeling sick again.

I now make choices to try and feel my best knowing that some foods cause me less symptoms than others. I haven’t cut out everything that makes me flare, because the truth is that almost all food flares me to a certain degree — even nutrient dense, health promoting foods. But I cut out the food that gives me the most debilitating/unbearable flares, and I focus on eating the foods that don’t affect me as much.

I no longer label foods as good or bad, safe or unsafe.

Food is food. The way that I talk about food can contribute to fear and anxiety. Yes, there may be some foods that I find make me sicker than others, but that doesn’t make them ‘unsafe’ or ‘bad’.

Conversely, if I label a food as ‘safe’ and then that food makes me sick one day, then I’m filled with fear: “Oh no, even my safe foods are making me sick!” If the way I feel after eating a certain food starts to change (and not just one time, but in a pattern), then I can adjust or choose to eat it less or eat something else more in its place. But I don’t have to put a label on it of ‘this is unsafe — avoid it at all costs’. That invokes a fear and stress response that I don’t need.

Over the years, I’ve found that my way of eating triggers some people.

I don’t go around saying “I don’t eat gluten! I try and avoid foods with added sugar!” I don’t care what anyone else eats and I don’t know why they would care about what I eat. When I politely say “No thanks!” to food they offer me at parties, in the work break room, or out to eat with friends, I’m often met with a barrage of comments: “Why don’t you eat that?” “One bite won’t hurt you.” “Are you on some fad diet?” “Do you think what I’m eating is bad?”

My way of eating makes some people feel insecure, or like I’m rejecting them (especially if they show their love through cooking for others), or like they are eating the “wrong” way. I think a lot of this comes down to diet culture and the toxic messages we constantly receive about how to eat. These comments really used to bother me, because I was insecure about being different from others, and for the first several years, I often really really wanted to eat the food before me that I was saying no to.

Now I feel differently: 1. Finding my self confidence and self worth helped me immensely to stop caring what others thing of how I eat — or me in general — and 2. I actually don’t want to eat the food I say no to. It does smell good and surely tastes good too. But what’s most important to me is how I feel, and if my goal is to be out and socialize with people, or get my work done at the office, then eating something that gives me a headache, diarrhea, dizziness, fatigue, uncontrollable gas, or some other symptom that will cause me to have to leave is not in line with that goal.

It’s easier now to respond to people’s prying or unwanted comments with: “You know, I find that eating the way I do helps me feel my best. But your food looks delicious! I hope you enjoy it!” And that’s that.

Letting go of being a victim.

Exploring my privilege has helped a lot. I felt like a victim and that it was so unfair that I couldn’t eat the cheese, spicy food, garlic, cakes, and other delicious food that I wanted to. This isn’t to brush off my suffering with “it could be worse” but instead to shift my focus on tiny things that I previously took for granted. I can hold in my heart how difficult it is to have all these food intolerances, and also how sad I feel about it sometimes — while also holding in my heart the gratitude that I don’t live in a food desert and have access to all kinds of grocery stores and online food stores, with food from around the world.

The more I practice finding gratitude and acknowledging what I do have (especially in relationship to my food and my chronic illnesses), the less it upsets me that I can’t eat what I want when I want.

Over 5 years it went from ‘everything makes me sick’ to ‘most foods’ to ‘some foods’.

When my endo symptoms begin, pretty much everything made me flare. Over several years, as I addressed other parts of my health — like my sleep, stress management, movement, gut health, etc — the way food affected me changed, and not all foods had such a drastic negative effect anymore. Bringing in new foods and learning to cook also helped. I finally felt like I had a way of eating that I found to be delicious and physically and emotionally satisfying.

After I had excision surgery, I could tolerate way more foods. But that was short lived when only 6 months post-op, I got the onset of MCAS. As it progressed, I was quickly back to “all foods make me sick.” Suddenly, all of my beloved spices, herbs, garlic, chocolate, coconut ice cream, and other sources of flavor in my food set off debilitating flares. That brought with it the feelings of deprivation and anger I’d first had when I originally changed my diet a decade earlier.

I try my best to have my food nourish me both physically and emotionally, but during that year long crisis where all literally foods made me sick, I felt so emotionally unsatisfied after eating because I’d restricted my diet immensely in order to not be completely incapacitated by food and not lose my ability to work. I thought constantly about food and had a lot of cravings. It was a dark time in my life, not only because my diet had to change so drastically, but also because my symptoms were constant and unbearable.

After addressing some of the contributing causes to my MCAS symptoms, my quality of life improved. Thankfully, over the last 3 years, it shifted to “most foods make me sick” and now I’m back at “some foods make me sick”. I’ve also spent several months processing my feelings, and once more have shifted back into overall neutrality and acceptance about my ongoing food situation.

Choosing not to eat certain foods can be a roller coaster.

At this point, I’m at peace on most days with the way I eat. I’m thrilled to say — and a bit shocked too — that I don’t miss most of the foods I used to love because I’ve found new loves: new foods, but also new sources of pleasure in my life as well as new coping mechanisms. There’s still foods like garlic, cinnamon, and fish that I’d love to get back, but I also understand that might not be possible for the time being. Hopefully in a year or two, but maybe not. My goal continues to be to broaden the range of foods I can eat, but with a calm, non-desperate mindset toward it.

There are the days when my frustration spikes, but I’m doing the best I can with the body I have. It’s not the ideal situation, but it’s the one I find myself in and have been in for 20 years now. So I’m trying to build my life around it and have the best life that I can anyways, one full of joy, community, and pleasure. In spite of excision surgery, addressing SIBO, and taking a holistic approach to my way of eating, food continues to be my biggest symptom trigger. I honestly don’t think there will ever be a day when “no food” makes me sick and I can eat whatever I want, but I’m learning to be okay with that.

I wrote this blog post to talk more about my personal journey with “restrictive” eating for chronic illness, to complement the page on my website which is more focused on the technical side of diet change related to chronic illness. Check it out here!