My Gaucher diagnosis made me feel like my body had betrayed me
Over time, I've learned to reframe my perspective and give myself grace
Living with Gaucher disease has shaped how I think about my body in ways I never expected. For many people, body image is about appearance. For me, it has been less about the surface and more about the deeper, unsettling feeling that my body is failing me.
When I was diagnosed with Gaucher, it came as a complete shock. I had no symptoms at all. One day, I was living as a happy, healthy young adult, and the next, I was sick, someone with a chronic condition. That shift in identity hit me hard. It was as though a line had been drawn between “before” and “after,” and my body no longer felt trustworthy. Even though I didn’t feel sick, I carried around this heavy new label that made me feel like my body had betrayed me.
That sense of betrayal resurfaced years later when I went through a difficult labor and a traumatic birth experience. It was one of the hardest challenges I’ve ever faced physically and emotionally. My recovery was long and painful, and I remember feeling disgusted, once again, that my body seemed to have failed me when I needed it most. I carried anger and sadness toward myself, as though my worth was tied to how well my body could perform.
A shift in perspective
It’s still a work in progress, but over time, I’ve started to learn the importance of giving myself and my body grace. Our bodies are not perfect machines. They bend, break, and sometimes surprise us in painful ways. Yet they also carry us forward, adapt, and heal in ways we don’t always see or give them credit for.
I was reminded of this recently at my Gaucher clinic checkup. To my surprise, my labs looked better than ever. That appointment was about more than just numbers on a chart; it was proof that even after trauma, even after moments of feeling broken, my body is capable of resilience. I’ve also been regaining my strength by regularly working out, something that has helped me rebuild both physically and mentally. Each workout feels like a small act of reclaiming trust in my body.
This experience has shifted my perspective. Living with a chronic illness makes it easy to focus on what’s wrong, on the parts of myself that don’t work the way I wish they would. But I’m learning to balance that with gratitude for what is still strong and working. My body isn’t perfect, but it is still mine, and it is still carrying me through.
To anyone else living with Gaucher disease or another chronic condition: If you’ve ever felt betrayed by your body, know that you’re not alone. It’s OK to grieve the challenges. But it’s also OK, and maybe even healing, to show yourself compassion. Our bodies may not always do what we want them to, but they deserve our care, patience, and grace.
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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