Ask Max: I Feel Burnt Out – Is This Normal?

Your monthly Q&A with Maxine—Duchenne parent and HF Fundraising & Chrysalis Grant Manager

Your monthly Ask Max, a space where the Duchenne community can send in real questions and hear directly from someone who’s living it. Last month, 'Should we consider a clinical trial? What’s it really like? This month 'Burnt out, Is it normal' Maxine responds below and shares her strategies to try and cope as best she can.

Maxine writes:

Ask Max: I Feel Burnt Out – Is This Normal?

Caring for Austin, my son with Duchenne, is a privilege. But I won’t lie, it’s exhausting. Some days, I feel completely drained. My energy is gone, my patience is thin, and I wonder if I’m doing enough. I think a lot of parents feel this way at some point. Feeling burnt out doesn’t mean you’re failing. It means you’re human.

Burnout can sneak up slowly. You might notice it in small ways, a snap at a sibling, skipping your own meals, or forgetting to check in with yourself. When it hits, it can feel overwhelming. The first thing I remind myself is that it’s okay to feel this way. Caring for a child with Duchenne is a marathon, not a sprint.

Here’s what helps me get through the tough days:

• Take short breaks – even ten minutes to step outside, stretch, or just breathe. It sounds small, but it works.

• Accept help – let friends, family, or local support networks pitch in. I used to feel guilty asking, but I’ve learned it actually makes me a better carer.

• Schedule rest – I put downtime in my diary, the same way I’d schedule a doctor’s appointment. It’s essential, not optional.

• Set realistic expectations – perfection isn’t the goal. I focus on what’s achievable today, not what might get done tomorrow.

• Talk openly – sharing honestly with friends or other Duchenne parents helps me feel less alone and less judged.

• Celebrate small wins – I keep a mental note of small victories, like Austin managing a new exercise or enjoying a moment of independence. These reminders are powerful.

• Focus on what I can control – Duchenne brings uncertainty. I concentrate on small, tangible things I can manage now, instead of worrying about everything at once.

  
  

Some days, even following these tips doesn’t make the burnout vanish. But each small step adds up. I try to remember: taking care of myself is part of taking care of Austin. When I pause, breathe, or reach out, I’m better able to support him.

Burnout doesn’t mean weakness. It means you’re committed. And the truth is, you’re not alone. Even a few minutes to check in with yourself, to breathe, or to share with someone who understands, can make a difference.

If you feel burnt out, know it’s normal. Treat yourself with the same care you give your loved one. Your wellbeing matters.

With care,

Maxine