The wellness movement needs to be more understanding of chronic illness

I live in a community where wellness is almost a language of its own.

People swap sourdough starters, recommend herbal tinctures, and debate seed oils over coffee. Home births are celebrated. Organic food is the default. There’s a quiet belief that if you nourish your body well enough, move enough, and eliminate the right toxins, health will follow.

I understand the appeal. There are parts of that lifestyle I genuinely love. I care about nutrition, I spend time outdoors, and I believe that sleep, movement, and good food matter. But living with Gaucher disease has taught me something that wellness culture often forgets: Being “crunchy” is, in many ways, a privilege of having choices.

When your body comes with a medical chart

For me, health has never been something I could optimize my way into. It has always depended on medicine.

Every two weeks, I receive Cerezyme (imiglucerase) infusions. They aren’t optional. If I stop treatment, my disease doesn’t politely wait for me to rethink my lifestyle. It progresses.

This year, my world became even more complicated when I was diagnosed with antiphospholipid syndrome and aspirin became part of my daily routine. I can care about nutrition and lifestyle while also recognizing that there are things those choices simply cannot do for my body.

I think about this beyond medication, too. During my first pregnancy, I had to confront the fact that I couldn’t approach pregnancy and birth entirely on my own terms.

Before becoming high-risk, I loved the idea of a low-intervention birth. Like many women around me, I imagined laboring at home for as long as possible and letting birth unfold naturally. But my medical reality didn’t allow me to make decisions based solely on preference. My delivery needed careful monitoring. Specialists needed to be involved. The hospital isn’t a compromise of my values; it became the safest place for my baby and me.

When people talk about birth plans or medication-free pregnancies, they’re usually sharing what empowered them. I celebrate that. But empowerment looks different when your body comes with a medical chart several pages long. Sometimes empowerment is saying yes to the epidural because your doctors recommend it. Sometimes it’s scheduling a labor induction. Sometimes it’s showing up for another infusion while everyone else is talking about detoxes.

I don’t think wellness culture is inherently harmful. What becomes harmful is when we confuse choice with virtue.

It’s easy to admire someone for making everything from scratch or avoiding medication when those choices are available to them. It’s much harder to recognize that many people aren’t choosing differently, they’re navigating circumstances they never chose in the first place. Chronic illness, disability, infertility, pregnancy complications, and countless other conditions change the menu of available options. And the healthiest decision isn’t always the most natural-looking one.

I’ve learned to care for my body with fresh food, regular movement, and rest, but I’ve also learned to trust the scientists who developed enzyme replacement therapy and the physicians who know when aspirin can prevent devastating complications. Those things aren’t in competition with each other. They’re partners.

I hope we can make wellness culture a little more spacious — a place where someone taking medication isn’t viewed as having “failed” to heal naturally; a place where hospital births aren’t seen as less meaningful than home births; and a place where we stop assuming everyone’s body offers the same choices.

Because, for many of us living with chronic illness, the greatest privilege isn’t drinking the perfect green juice or having the ideal birth plan. It’s having the freedom to choose at all.

---

Note: Gaucher Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Gaucher Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Gaucher disease.