Why Putting Your Health First Is Crucial

Putting your health first can feel difficult when you’re living with a rare disease. There are many tasks to manage, and most of us don’t want our illness to become our full-time job.

The weight of life with a Rare Disease

We have children, dogs, family members, friends, sometimes clergy, work, volunteer commitments, and countless responsibilities pulling at us every day. Somewhere along the way, our health often gets pushed to the back burner. And when that happens, our bodies pay the price. We pay the price.

That’s why putting your health first matters. Not eventually. Not when everything else is done. First.

Self-first is not selfish

This doesn’t mean neglecting our children, pets, or responsibilities. It means recognizing that if we don’t take care of ourselves, we eventually won’t be able to take care of anyone else. The “put your mask on first” saying exists for a reason—if you don’t have air, you can’t help anyone else when the plane is going down.

Choosing intention daily

Living with a rare disease requires intention. It requires honesty with yourself and with your body.
One of the most helpful practices I’ve found is checking in with my body first thing in the morning:

What’s working well today?

How much energy do I actually have?

What are my priorities today?

What can wait until tomorrow?

From there, take care of your musts first, then your needs, and then your wants. Always listen to your body.

A lesson learned the hard way

It’s ironic that I’m writing this from the hospital—that’s exactly what inspired this piece. I’ve been trying to take care of my musts, needs, and wants all at once, without truly prioritizing. That lack of prioritization matters more than we sometimes realize.

How you prioritize is personal. For me, it’s a written planner and a daily list. For others, it’s a digital planner. Some people keep a mental tally and lean heavily on their support system. There is no one right way.

What care means for you

Taking care of ourselves looks different for everyone. What matters is that we actually do it—because when we don’t, there are consequences.

And with a rare disease, those consequences tend to arrive faster and hit harder.

Putting your health first isn’t selfish.
It’s necessary.