Giving ourselves permission to take a rest is vital

Some days, my husband, Jared, who has severe hemophilia B, is unstoppable. He’ll haul a heavy plant pot across the living room, rearrange furniture, or even knock out a workout that would leave me sore for days. On other days, he’s down for the count; there’s no negotiating with bleeds. Add in epilepsy, and sometimes seizures push him into sleep whether he wants it or not.

I’ve learned that this ebb and flow is part of life with chronic illness. But it’s also a lesson that hits close to home for me, as someone who is neurodivergent and still figuring out how to manage my own bursts of energy.

We like to think we can plan our way out of everything. Jared and I have our calendars, routines, and reminders, and I have no shortage of project management tools to keep myself and my whole family on track. But no matter how much we prepare, the body sometimes says, “Not today.”

For Jared, overdoing it has immediate consequences. A bleed or a seizure can stop him in his tracks. And while that frustrates him, it also reminds me of something I often forget: Real maturity is learning to listen to your body, even when your brain is screaming, “Keep going!”

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For me, rest is not second nature. I occasionally suffer from task paralysis, and sometimes it’s extra challenging for me to get started with anything. But once I’ve found my groove, I turn into a car without brakes: I’ll keep running at top speed until something forces me to stop. If I’m totally motivated, I can work through the night and push myself far past what’s healthy.

These days, I try to track my workouts, sleep, and night-shift schedule with a little more vigilance. Between working for clients on the other side of the world and being a mom on top of it, I can’t afford to ignore what my body’s telling me. Still, there are mornings when I realize I’ve only had a couple hours of real sleep, and I have to make the conscious choice to slow down. Even that takes effort.

It’s strange to admit, but for someone like me who is neurodivergent, stopping can be harder than starting.

Giving permission — to ourselves and each other

One thing marriage has taught me is that rest isn’t just a personal decision. It’s something you sometimes have to give each other permission for. Jared has learned to reassure me about taking a break when I’m spiraling. And I’ve learned to hold space for him on the days when bleeds or seizures leave him exhausted.

At first, it felt like weakness. But over time, I’ve realized that giving and receiving that permission is an act of respect. It says: I see your limits, and they don’t make you less.

The truth is, no matter how good a planner you are, you can still overdo things. And when that happens, the body will let you know.

The older we get, the more I see that strength isn’t about pushing harder, but about knowing when to stop. For Jared, myself, and anyone navigating chronic illness or neurodivergence, permission to rest is not indulgence. It’s a strategy for thriving.

And maybe it’s also love — the kind that makes space for us to be human, imperfect, and in need of a break.

Note: Hemophilia 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.