I felt constantly anxious as I was living in this world of chronic pain that totally consumed me. I almost completely lost my appetite so didn’t think about food much — all of my energy was focused on managing whatever disease I was dealing with. In turn, I wasn’t really eating and pretty quickly lost a lot of weight. My chronic disease was invisible but my weight drop was noticeable. While no one could see the pain, everyone seemed to notice how much weight I’d lost. People started commenting on my weight and asking if I was ok. I remember thinking how ironic it was that food was the one thing not on my mind and yet it was the thing everyone assumed was my struggle. I wasn’t worried about my weight at all, I just wanted the pain to go away.
A year later, I was diagnosed with Lyme disease. Lyme is a bacterial infection that you get from being bit by a tick. Traditional messaging — what I grew up hearing — is that it is easy to detect Lyme because the infected person will develop a distinct bullseye rash. That rash is your cue to go to the doctor for quick antibiotic treatment. But in recent years, it’s become more well known that Lyme can be hard to diagnose, often because the traditional rash does not present across all who are infected. And the longer it takes to diagnose Lyme, the harder it becomes to treat it.
I fell into that group of patients that do not receive an early diagnosis. I didn’t have a traditional rash. I instead visited a slew of doctors and specialists’ offices as I was trying to understand what was happening to me. Everybody told me nothing was wrong.
Lyme promotes widespread inflammation and can cause a range of symptoms that manifest differently in each person. I had foot pain, so I visited a podiatrist, got standard imaging done and was told nothing was wrong. I had back pain, so started seeing a chiropractor and paid hundreds of dollars for chiropractic corrections that didn’t help. I eventually landed in a psychiatrist’s office to seek support with the emotional turmoil after a year of dead ends and physical pain. The psychiatrist tried to convince me that this was all just my anxiety. I had a year-long tour of the US healthcare system, visiting all these specialists in their silos, without anyone looking at my body holistically. I’ve since learned that my experience is pretty typical for a Lyme patient, which is really sad.
I was a freshman in college, trying to focus on making new friends while grappling with something serious happening in my body. It was hard. I’m a firm believer in the mind-body connection and believe in techniques like meditation to help promote positive health, but I just knew that wasn’t all that was happening here. I knew the underlying reason for my pain was in my body, even though no doctor could identify anything.
I finally started seeing a functional medicine doctor who worked with me holistically, taking into account all of my symptoms and ultimately diagnosing my Lyme. I also found a wonderful therapist who supported me through this “new” diagnosis and all the new questions that it brought up for me. My doctor focused on scaling down any existing inflammation in my body, a path that took us directly to food, something I’d been largely ignoring during this phase of life.
My doctor started testing my immune response to food and we quickly discovered that my Lyme-induced inflammation made me sensitive to most inflammatory foods: gluten, dairy, sugar. She guided me through an elimination diet to see what would happen to my symptoms without these inflammatory foods, and I started thinking a lot about what it means to eat healthy.
At first, I looked for things that mirrored more typical treats that I couldn’t eat anymore — I’d grab a gluten-free cupcake at the grocery store and pat myself on the back. Over the years, I’ve developed a more nuanced relationship with food. I don’t have celiac or an inherent allergy that inhibits me from eating trace amounts of any one thing, which is really lucky. So for my own body, I’ve developed an attitude of focusing on what I do eat rather than what I don’t. I eat a lot of fruits, veggies, and whole grains and not a lot of processed sugar. But if I’m excited about a cookie I see, I’ll eat it. I focus on what I get enjoyment out of instead of what I’m trying to limit or avoid. I’ve found that’s been more sustaining for me and I’ve been lucky to be able to reduce my inflammation significantly with this approach.
Before Lyme, food was always something that brought joy, and I’m really grateful to be back in that place today. Food has played an active role in my life over the last 7 years. My personal food journey actually inspired my public health career. I work to protect access to and strengthen federal food programs so that healthy food is available to more families.
This sounds really cheesy, but I think the most helpful thing to understand when you’re dealing with pain or a diagnosis is that you’re not alone. I don’t always agree with our diagnosis naming approach to medicine; I think so many diseases share similar underlying physiological mechanisms, and putting a name on it can be limiting. But I do think there’s an advantage: it introduces you to a whole community of people who are dealing with a similar experience. One of the first things I did was go online and tap into support groups. I never had the pressure to participate myself, but it was comforting to read stories from others that captured what I was experiencing.
And if food is an important part of your health journey it helps to think about what you can eat instead of what you’re trying to limit. It’s a much more fun way to approach life. There are so many ingredients out there and so many meals you can make that fall into this flexible category of a healthy diet — whatever that means for you."