Constant medical vulnerability can be exhausting

There’s a kind of vulnerability in living with a chronic illness that isn’t talked about enough. It’s not just the big procedures; it’s the constant, quiet ways you’re asked to open yourself up. As someone with Gaucher disease, I feel it in every appointment, every explanation, every moment of physical exposure. And lately, I’ve realized I’ve been feeling it in the emotional space of new motherhood, too.

So much of it happens quietly: the exams, the questions, the explanations, the skin exposed, the body accessed. Even when everything goes smoothly, I’m constantly giving up my privacy. And over time, that builds up. It becomes its own kind of exhaustion, which I call “vulnerability fatigue.”

We don’t talk enough about that feeling of being “all out” of openness. For me, it’s not fear or even stress. It’s more like a quiet heaviness before an appointment or treatment day. I know the routine. I know I’ll be fine. But I also know I have to be vulnerable again, physically and emotionally.

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And lately, I’ve noticed how similar that feels to what I went through after having a baby. The postpartum period came with its own constant vulnerability — my body, my emotions, my energy, and my boundaries — and I wasn’t really prepared for that. Family members were wanting to visit, requesting updates and photos, and trying to help at a time when I felt extremely raw and open. It was loving, but overwhelming. I didn’t always know how to say, “I just need some privacy right now.”

Medical vulnerability mirrors that, not because the experiences are the same, but because the emotional rhythm is. You open up because you have to. You let people in because there isn’t really another option. And even when everyone is kind and professional, there’s still a part of you that gets worn down from being exposed so often.

When to share

The real challenge is knowing when to share and when to hold things closer. In medical settings, you share because your health depends on it. But that doesn’t mean every detail of how you’re feeling needs to be made public. The postpartum period taught me that it’s OK to draw boundaries. It’s OK to say, even just to myself, This part gets to stay mine.

However, I often feel torn. Sharing helps sometimes; it connects me to the people who care about me. It makes the medical stuff feel less isolating. But there are moments, especially when I’m tired or overstretched, when sharing just feels like another version of being exposed. Another examination, just without the gown.

I’m learning to pay attention to that shift inside myself. To notice when talking about something makes me feel lighter, and when it makes me feel drained. To recognize when openness is healing and when silence feels like self-preservation.

And I’m realizing something important: Privacy isn’t the opposite of vulnerability. It’s part of it. It’s a boundary that lets you keep showing up in the places where you have to be open, like infusion days or medical appointments, without burning out emotionally.

So I’m trying to give myself permission to hold both truths: I can be honest about what I’m going through. And I can keep certain things just for myself.

Living with a chronic illness means carrying a level of exposure most people never have to think about. Becoming a mother added another layer I’m still navigating. But somewhere between the medical vulnerability and the emotional vulnerability, I’m learning to protect the pieces of myself that feel too tender — not by hiding them, but by choosing when and how I let them be seen.

And that choice, I’m finding, is its own kind of strength.

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.

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