What can you eat?
Remember on MTV Cribs when celebrities would open their refrigerators? Some of them would proudly show off shelves of Vitamin Water (I’m looking at you, 50 Cent and your obvious brand sponsorship). Others would awkwardly chuckle and nervously hold up their favorite hot sauce. Some would have perfectly styled shelves of fresh produce. Looking back, I realize it was my favorite part of the show because it was the most relatable. It felt like the only, “Celebrities, they’re just like us!” moment. There’s vulnerability in sharing what we eat because people have a lot of opinions about diet choices. Having autoimmune disease makes me feel like I’m on MTV Cribs, opening my fridge and revealing what I eat all the time.
A couple of years ago I developed chronic hives. Think of the worst sunburn you’ve ever had. Maybe you got it when you were a kid. On one of those days you couldn’t be bothered with sunscreen because the pool, Slip n’ Slide, or sprinklers beckoned through the beaming rays of sunlight. That sunburn. Only, mine didn’t come with the fun, the sun, or any clear reason. And the burning persisted. Doctors told me I was allergic to fragrance, gave me a 95 page PDF of products that were “safe” and told me that I’d be allergic forever. The end. So, I desperately cleaned out my cabinets. I stopped wearing perfume, buying candles, and enjoying essential oils. I radically changed my beauty routine. I had to use *gasp* unscented deodorant.
The months kept passing, the hives were blazing, and new symptoms started coming to life. I couldn’t breathe. My heart was always racing. I was having weekly panic attacks. It became impossible to drink something as benign as water without feeling sick. My entire body hurt, joints, skin, muscles, my eyelashes probably hurt. I couldn’t stay awake for a full workday even if I slept full nights. But, hey! At least I got rid of all of my perfume and smelled like I hadn’t showered in days.
I was in and out of labs for blood work. All of my tests were normal. Doctors told me I was probably just stressed. A lot of it was probably in my head, they said. I started looking for new doctors. Finally, a naturopath read my results and told me that my tests revealed severe autoimmunity. In addition to celiac disease (one I was aware of and had long been treating), mixed connective tissue disease was in the game, too. Long story short: my body was attacking its cells and tissues and treating them as foreign invaders. The diseases were flaring and making my joints seize, my adrenals malfunction, and on my worst days, making it hard to take a flight of stairs. I immediately asked about food because I knew gluten triggered celiac flares. Doctors told me the food was probably not the answer and changing it wouldn’t help. Take low grade chemo drugs, they said. Staying committed to diet and lifestyle changes is too hard and you won’t be able to do it, they said.
Something to know about me: if someone tells me I can’t it means I will.
Something else to know about me: food is one of the greatest loves of my life. I’ve been cooking and baking since I was a teenager. I read cookbooks for fun. I communicate love through food. I experience culture through food. My life’s dream was to travel the world in pursuit of eating the perfect croissant in France, slurping the longest noodles in Japan, savoring chicken paprikash in Hungary (my grandmother’s home country - it’s a wonder she didn’t add paprika to her coffee). My home is the home people come to for the holidays. And I had to radically change my relationship with food in pursuit of healing. I knew I was in for a period of grief. And I also knew I was okay with it because my intuition told me that this path was my path.
So, off I went. I implemented the Autoimmune Paleo diet. I maintained gluten free, but also went dairy free, refined sugar free, legume free, nut and seed free, grain free, nightshade free, egg free, and alcohol free. The word free shows up a whole lot for something that made me feel trapped. The elimination phase was supposed to last 8 weeks and it lasted 18 months. I had to learn a new way of cooking, baking, and eating. Nothing, and I mean nothing, was convenient. I made everything from scratch. On some days, it felt like the only thing I wasn’t doing was pressing my own olives for oil. But, I started feeling better, so I kept going.
Yet, when I’m out in the world, asking lots of questions about what’s in food, reading every ingredient label, or with new people, if there’s a conversation, it usually goes something like: “What can you eat? My god, I could never do it. You poor thing. Your life must be horrible.” Pro-tip: don’t stake your healing on approval, understanding, or acceptance from others.
Over the years, I’ve learned that when people are taken aback by my diet it reveals something important about them: they’re afraid. They fear they may someday have to face their own sickness. And, because I appear healthy, they fear they may also be battling an invisible disease.
The hard truth is we’re all living in a world that doesn’t support our health. I happen to be one of the people who can’t ignore it because my body won’t let me. We have a food system that is harming us and a healthcare system that refuses to acknowledge it as a problem. The United States food system is built on a business model that incentivizes the growth of filler ingredients that are proven to inflame the body over fresh fruits and vegetables, and it upholds nutritional scarcity in favor of profit. The United States healthcare system is built on a business model that keeps us coming back for more treatment instead of one that gauges its success on healing us. It’s not lost on me that as an autoimmune patient, my illnesses with no cure have the potential to heavily line some pockets with cash. I not only had to change what I ate, but I also had to learn how to advocate for myself and question experts and norms. And I was scared to question them and I understand the fear in others when they speak to me about what I’ve done to treat my illnesses.
I’ve had to break a lot of habits, exit unhealthy cycles (namely, my addiction to external validation that hinged on constant performance and productivity), and change the way I live in this world by rebelling against the standard American diet and standard medical care. Even though my path is healing me, it’s also a hard path to take. I’ve also learned that I have the power to live fully on my own terms and not on the terms of food and medical systems that have been set up to keep me sick.
I believe that food is life. Food is community. Food is family. Food is comfort. Food is the light. Food is the greatest medicine. So, what can I eat? Anything and everything that heals me.
Author’s note: this post is not intended to be or replace any medical advice. If you are feeling unwell please speak with a medical care expert.