My daughter’s new diagnosis stirs feelings of guilt

One of my greatest fears has come to fruition. Last week, my daughter was diagnosed with vitiligo, a disorder that causes the body’s immune system to attack skin cells that produce melanin, causing the skin to lose its color. Upon hearing the diagnosis, I felt the air leave my lungs, as though my body knew this was coming long before the doctor confirmed it.

I’ve lived with an unspoken worry since the day she was born that one day, like me, she would be diagnosed with an autoimmune condition. I have neuromyelitis optica spectrum disorder (NMOSD), a rare autoimmune disease, and it has taken years for me to manage it. Even now that I’m in remission, it feels more like a delicate truce than a victory.

It was like my daughter’s diagnosis had confirmed the quiet guilt I’ve carried since the moment I first held her in my arms. I’ve always worried that I’d pass something on to her.

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There’s a particular kind of heartbreak that comes with watching your child face something similar to what you’ve already endured. It’s not just sadness, it’s guilt wrapped in biology. Logically, I know that I didn’t choose my genes and can’t control what her immune system decides to do. But logic doesn’t calm the ache of maternal responsibility.

Our family is riddled with autoimmune disorders, including diabetes, rheumatoid arthritis, inflammatory bowel disease, and postural orthostatic tachycardia syndrome. It’s a cruel genetic lottery, and it seems like every ticket we draw reveals another vulnerability.

When I was pregnant with her, I was taking a corticosteroid to prevent an NMOSD attack. It was the only way to keep both of us safe, but I’ve replayed that decision countless times since. Did the medication change something in her developing immune system? Did I unknowingly set this in motion before she even took her first breath?

I know the science doesn’t support my guilt, as autoimmune diseases are complex — a mix of genes, environment, and chance. But science doesn’t erase my fears.

Watching my daughter start this journey has forced me to confront my own illness all over again. Living with NMOSD has taught me to be strong, but also to surrender to the treatments, the uncertainty, and the exhaustion that comes from being at war with your own body.

Now, I find myself searching for ways to transfer that strength to her. How do I teach her that her body, even with its imperfections, is still her ally? How do I make sure she never thinks of herself as being broken?

Maybe that’s the unexpected gift in all of this: that I can guide her not as a parent from the outside, but as someone who understands what it feels like on the inside. I can show her that while autoimmune diseases take from us, they can also teach us patience, compassion, and resilience.

I’ve found comfort in small moments like watching her laugh with friends, brush her hair, roll her eyes at my parental reminders — all the ordinary things that remind me that she is still herself. The diagnosis hasn’t taken her joy. And if she can hold on to that, then maybe I can, too.

I know this won’t be the last time that I’m scared for her. Autoimmune diseases are unpredictable, and parenting with one only amplifies that uncertainty. But what I’ve learned through my own journey is that we can live fully, even when our bodies challenge us.

Maybe that’s what I’ll pass down to her: not the broken genes, but rather the courage to face whatever comes next.

Note: Neuromyelitis 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 providers 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 Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.