My Body Is a Wonderland: Learning to Advocate for Myself While Battling Chronic Illness

When I was diagnosed with gastroparesis, my gastroenterologist told me I may never get better and recommended that I take a medication to help my stomach function. The first recommendation was an antibiotic with every meal. I didn’t want to do this, so she then recommended taking metoclopramide, a medication that hospitalized my maternal grandmother for weeks. She and I have had parallel reactions to several medications, so I was wary of trying it. Her last try was a non-FDA-approved medication that would have to be made a compound pharmacy, and not covered by insurance. Now, I know the FDA is far from perfect, and there are a lot of medications that are not approved here but are in Europe, but my fear was what if this drug worked? I’d then be stuck paying completely out of pocket for who knows how long… and so I declined again. I told her I read that it could be controlled by diet, and I’d like to try that first. After this appointment I called the nurse, not sure if I was supposed to make a follow-up appointment. Apparently, since I refused medications, the doctor didn’t need to see me again.

Learning what my body could and could not digest took years to figure out, and my body continues to be a science experiment. The protocol for gastroparesis (many small meals consisting of very low fat/fiber) conflicted with that for interstitial cystitis (low acid/potassium), leaving very few truly “safe” foods. Early on, a bad reaction to something as simple as cooked veggies typically lasts days, so Friday nights became Experiment Night. Can I eat sautéed bell pepper? How cooked do the carrots need to be? I’m a seafood-eating vegetarian, and life became surrounded by trial and error. Every few months I’d try something again and hope it would work this time, and I found that over time some foods could be safely added back into rotation.

I spent hours on the internet, reading blogs and articles by nutritionists and learning about digestion and how the body processes food. I’ve tried a myriad of supplements, and have waffled on how “high quality” I need to go (or can go) without busting my budget. I’ve learned about the joy of probiotics and the necessity of magnesium. I take zinc and omega 3-6-9. I know there’s a decent chance I just have really expensive pee, but I stop taking a supplement now and then and at least I feel the difference. It’s good to know the effort and expense is worth it.

For years, the prospect of eating out caused me great anxiety. Not only would I have limited control over the food, but what if I had a sudden flare of nausea? Would the people there understand? I was lucky in my close friends and family, who understood that I needed to have full control of which restaurant we were going to, and that I had to be able to look at the menu online prior to going (frankly, this is still somewhat true). To this day I assess how each meal made me feel, nutritional levels, what I might eat at the next meal to balance the nutrition. But this level of self-assessment has a cost: I didn’t do a whole lot of “living” in my mid and late 20s because each and every day was a struggle, an assessment, a risk. I could barely plan beyond the next meal and it was exhausting.

It’s been nearly a decade and to everyone’s surprise (mine included), I’m so much better than where I started. I can have small doses of hummus, a few roasted brussel sprouts, a raw unpeeled apple, a small side salad. These were unthinkable in the beginning and for many years after. I’m still constantly assessing “how I’m feeling” to help me gauge what I might be able to eat next, and still have spontaneous bad reactions to foods that have been OK. Along the way I’ve had an understanding and helpful internist and for much of this journey, a friend who is a holistic nutritionist.  These two women helped fill the gap of knowledge of a formal nutritionist or dietician, neither of which were covered by my insurance and which I simply couldn’t afford at the time. It involved a lot of communication and research on both of their parts, and mine as well.

I’m glad I was able to advocate for myself early on and that I listened to my gut (both physical and metaphorical). To me, this entire experience is what I hope for anyone living with chronic illness: a belief in yourself, a fantastic support system of close friends and family and the encouragement of professionals helping you listen to your body.

This post originally appeared on Salt and Sage.

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