Listening to my body without shame when it says, ‘Rest’

For most of my life, I wore exhaustion like a badge of honor. If I wasn’t busy, I felt behind. I learned early on that to be seen as capable, especially as a Black woman, I had to show strength at all times, no matter how depleted I felt inside.

I grew up surrounded by the belief that rest was indulgent, something you earned only after pushing yourself past your limits. I thought that if I kept moving, I could outrun the fear of being seen as lazy or unmotivated. Then Huntington’s disease changed everything.

Even after I was diagnosed, I still tried to push through the exhaustion, pretending I could keep up with everyone else. I didn’t want to give in. I didn’t want to appear fragile. Rest felt like surrender.

But the truth is that Huntington’s taught me that rest isn’t weakness; it’s wisdom. My body now speaks louder than ever before, and learning to listen has become one of the deepest acts of self-respect I’ve ever practiced.

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Rest is sacred

An unspoken expectation exists that people living with a chronic illness must stay relentlessly positive and productive to prove we’re still “strong.” I used to believe that, too. I thought that showing up meant ignoring pain or pretending fatigue didn’t exist. But I’ve learned that real strength looks different: It’s honest, soft, and sometimes still.

I used to compare myself with the version of me before Huntington’s, the one who could work 10-hour days, go to the gym, and still have energy to socialize afterward. Now, just getting dressed and making breakfast sometimes feels like an accomplishment. That shift was initially hard to accept. I mourned the woman who used to do it all. But slowly, I realized that my worth isn’t measured by how much I produce; it’s reflected in how deeply I care for myself.

Even when I knew I needed to rest, guilt used to follow me like a shadow. I’d lie down in the afternoon, but my mind would race with thoughts of what I “should be doing,” such as emails, laundry, or work assignments.

Rest isn’t just about sleeping or taking a nap; it’s about creating space to reconnect with my body. On my hardest days, I remind myself that rest is a necessity, not a luxury. It’s how my body heals, recalibrates, and survives. When I allow myself to rest without shame, I’m honoring the reality that I’m doing my best within the limits of my body.

Letting go of guilt is a daily practice. Sometimes it means turning off my phone and choosing quiet over constant stimulation. Sometimes it means saying no to invitations, even when I fear disappointing others. And sometimes it’s as simple as permitting myself to lie down in the middle of the day without apologizing for it.

I can now tell the difference between physical fatigue and emotional overwhelm. I can sense when my body is whispering, “Slow down,” before it has to shout. This awareness didn’t come overnight; it came from paying attention.

Some days, rest looks like a nap. On other days, it may look like meditation, gentle stretching, or sitting outside with a cup of tea. I’ve learned that my body doesn’t always need sleep; it needs stillness, presence, and compassion.

In a society that tells us our value is tied to productivity, choosing to rest, especially while living with Huntington’s, can feel like rebellion. It’s saying, “I refuse to run myself into the ground just to prove I’m worthy.” That’s powerful.

I’ve started to treat rest as sacred, not optional. I create small rituals around it: soft music, cozy blankets, herbal tea, and a moment of gratitude for the body that carries me through each day. These moments remind me that rest isn’t about giving up, it’s about gathering strength for what’s next.

Rest also allows me to show up more fully for others. When I’m well-rested, I’m more present, more compassionate, and less reactive. I can listen deeply to myself and to the people I love. I’ve realized that by modeling rest without guilt, I’m giving others permission to do the same.

I no longer need to earn my rest. I no longer measure my worth in productivity. I’m learning that honoring my limits doesn’t make me weak; it makes me wise. And in that wisdom, there’s freedom.

Living with Huntington’s disease continues to teach me lessons I never asked for, but desperately needed. Chief among them: My body knows what it needs to survive. My only job is to listen.

So, when my body says, “Rest,” I’m finally learning to whisper back, “Thank you.”

Note: Huntington’s 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 Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.