Go at Your Own Pace | Rare Disease Series

Go at Your Own Pace | Rare Disease Series

February is a special month in the rare disease community as it concludes with Rare Disease Day (the most unique date on the calendar every four years). Rare Disease Day is a day for patients and caregivers to come together to “show their stripes” and highlight some of the unique challenges of living with a rare disease. All month long, we’ll be honoring the challenges and stories of rare disease warriors here on the blog.

I had hoped to publish this piece last week, and the irony is not lost on me that I’m a week behind schedule. The words I’m sharing with you today are words I’ve had to preach to myself over the last week (and was graciously reminded of through a friend).

When navigating the world with a rare disease or chronic illness, you have to go at your own pace. We often have to lay down our plans to go at the pace our body, mind, and spirit demands. 

We often think of these limitations as physical, but through the years, I’ve discovered they are just as much physical as they are mental and emotional. When the limitations we often contend with are beyond our control, we must remind ourselves that it is not only okay but necessary to go at our own pace. 

Accepting Our Limitations—Physical, Mental & Emotional

If any of the following (or beyond) have caused you to have to hold back or go forward at a slower pace, know you are not alone.

Physical limitations of:

+ fatigue

+ lack of energy

+ weakness

+ body aches and pains

+ illness

Mental/emotional strains from:

+ a calendar full of doctors appointments

+ looming decisions

+ the anniversary of a diagnosis or loss

+ unexpected news

As someone who battles a rare disease, accepting physical constraints can be frustrating. But it is the mental/emotional limitations that challenge me the most—especially identifying them. When we do recognize them, it’s still not an easy choice to honor our limits. Doing so requires us to surrender the best of intentions and well-laid plans. 

This past week, that looked like setting aside time to process through grief. While my desire was to press on and type up the words of this post, not doing so honored my grief and acknowledged it as a limitation. After the loss of a loved one to cancer—someone who had endured chemotherapy at the same time I did—I had to create space to let my soul grieve. I had to create space to allow myself to feel everything the loss stirred up.

Fighting Back with Truth

What I produce is not an indication of how loved I am. - @marybetheiler

The world screams at us to do more and be more, but acceptance begins from a place of acknowledging the limitations of our mind, body, and spirit. Healing is found in recognizing that it is okay not to go at the pace the world demands.

For those who live with a rare disease or chronic illness, we know this is easier said than done. I must fight against my innate desire to conform to the ways of the world—a path that promises ease and comfort but ultimately fails to provide.

My mind, body, and spirit naturally long to do more. Finding contentment when we are restricted by a body that simply cannot keep up with the pace we seek is hard. Freedom has come in the form of fighting back with truth. It has been found in remembering that God created me—just as I am—on purpose. Freedom is found in knowing that God can and will use me just as I am, not once I have reached a certain status. Freedom is found in peeling back the layers; in realizing that what I produce is not an indication of how loved I am.

Our weakness—and what we allow God to do with it—defines us more than anything we can do in our own strength. We are loved just as we are. God is with us, no matter our pace. If you are battling the desire to do more, rest in that truth today.

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