Going gray prompts questions about the impact of caregiving on my life

I’m going gray.

Wait, I should clarify that I’ve been coloring my hair since I was 25. It started coming in gray long before I became a mom to three sons with Duchenne muscular dystrophy (DMD): Max, 18, Rowen, 15, and Charlie, 13. But after hiding my natural color for 20 years, I’ve decided to stop.

I’m tired of getting it colored every four to six weeks and using my “gray away” spray. I like my hair long, but I hate to see it grow because of the pure gray hair that shows up at my roots. It’s a never-ending process, and I’m done with it. I want the new growth to match what is already there. Is that too much to ask?

My oldest daughter, Lexi, 23, recently got married and made me promise that I wouldn’t go gray until after her wedding. I was obliged, but I have since started letting it grow out.

Recommended Reading

September 12, 2024 News by Esteban Dominguez Cerezo, MS

NS Pharma DMD treatment gets FDA rare pediatric disease status

The problem is that I feel like I need to make a public announcement: “I’m going gray because I don’t want to color my hair anymore!”

I’m worried that when I see friends and acquaintances out and about, the drastic change will make them think something is wrong with Max, Rowen, or Charlie. I worry they’ll think Duchenne is aging me.

I tell myself I made this decision because I was tired of the upkeep, but then I question myself: Does it feel like extra upkeep because I’m a caregiver to three young men with DMD? Does being a caregiver affect every decision I make?

I can feel my fellow caregivers nodding their heads in affirmation. But I refuse to accept that as my reality. Even if I’m wrong, I refuse to admit that Duchenne has that much control over my life.

I’m still me

I hope some parts of me are still just me and that I would have made the same decision regardless of Duchenne. I am low maintenance in regards to my personal style, and my husband of nearly 25 years, Jason, repeatedly assures me that he appreciates this.

I still think I look put together when I go out — at least, I try to look that way. It’s always been important to me to look like I’m surviving DMD when I’m at specialist appointments and school meetings. Duchenne is hard, but I never wanted anyone, especially my sons, to think it was winning.

My style may be unique, but I am a busy mom of seven who has never felt the need to fit in.

I grew up in foster care, different from everyone I knew. I made it through college independently, different from everyone around me. I became a mom to three sons with DMD. I have met only two other moms in that situation, but neither had as many additional children as I do.

I have only ever known how to be me my entire life. I have always been different; trying to be anyone else would be futile.

Does being a Duchenne caregiver make me tired? Yes, definitely. Do I worry about my sons and when Duchenne will take them from me? Of course I do. That will never change.

But does gray vs. brown hair make a difference? Not at all. I could color my hair for another 20 years, but it won’t stop the losses that accompany Duchenne.

Note: Muscular Dystrophy News Today 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 another 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 Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.