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Pacing Yourself, Pushing Yourself: Managing Energy With a Rare Disease

I am beginning this article on my commute train to work, starting another work week after a typical weekend for me of rest and activities.

Like many people with rare diseases of all kinds, I struggle with my energy levels. Learning how to both lead the life I want to lead and respect my body has been (and continues to be) a journey.

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Tips for managing energy levels with a rare disease

Here are a few things that have helped me the most recently:

Listen to your body

So cliche, I know, but it's also SO true. Listen to the patterns your body has developed in coping with your rare disease and figure out how to adapt. Sometimes, that's changing your schedule around to only doing one activity or doing activities in an order where you can conserve energy between them. Sometimes, it's managing your expectations about what you will do.


Every day, I internally map out what I need to do and what I want to do. Needs are things like work, appointments, and obligations. Wants are things like stopping for lunch or coffee or a quick stop at a store to browse. I think about what I have to do, what I want to do, and how to balance it all.

Resist the FOMO (fear of missing out)

The rare disease FOMO is real! Resisting the endless social media scroll, where everyone seems to be out there doing things, and I'm on the couch with a very achy body. It is disappointing sometimes, but dwelling on it too much doesn't help me.

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Find things that you CAN do

I'm lucky that I happened upon a physical activity that I can adapt and that works with my physical needs. I just happened upon a pursuit that works with some of my physical disabilities due to my rare disease, but it doesn't have to be physical!

Get interested in things

The performing and visual arts, music, history, travel (vicarious or otherwise!) – there's so much that one can get passionate about. I found that finding things that interest me, that I can do a deep dive into, helps me manage my chronic pain and helps me manage energy levels.

Energy conservation is an art

Now, writing this down, I must confess that I admittedly fail a lot at this. In full work days, pets to take care of, things to attend, it's hard to manage it all and prioritize staying healthy. It's easy for me to overdo it (see: first international trip since 2019 and ensuing exhaustion!), but sometimes, overdoing it is worth it. Sometimes it isn't.

For me right now, energy conservation is an art. It's an evolving art; sometimes, I fail at it by doing too much and sometimes, I don't push myself enough and end up bored. Eventually, I hope to find that elusive perfect balance, but until then, I try my best to do what my body and mind need and want.

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