7 Years Later: What Having an Incurable Disorder is Teaching Me about Living Well

July 22, 2023

I was flipping through the pages of my older journals this week when my eyes stopped on the following words scrawled at the top of the page: what is God teaching me?

What is God teaching me?

I wrote these words during a season marked with intense anxiety, crippling pain, and many, many tears. Have you ever walked through circumstances that were so life-changing they made you wonder if you were simply destined for suffering? 

That’s exactly how I felt after I was diagnosed with Vascular Ehlers-Danlos Syndrome, a connective tissue disorder that makes my blood vessels, arteries, and organs prone to spontaneous rupture. As I write these words now, I am seven years removed from that season. And time is a wonderful teacher. So that scrawled question still lingers: what has God taught me in these seven years?

I’ll give you the spoiler here: He has taught me how to live well, how to truly embrace Jesus’ promise that He came so that we might have abundant life, and how that promise has nothing to do with earthly prosperity and everything to do with spiritual blessings that come from a thriving relationship with Jesus.

But if you are curious as to how I came to that conclusion, read on. Here are five things having an incurable genetic disorder is teaching me about living well. 

Life is a precious gift.

In the midst of the challenges presented by Vascular Ehlers-Danlos Syndrome (VEDS), I have come to realize that life itself is a precious gift from God. So far those challenges for me include a ruptured colon, a ruptured uterus, a ruptured carotid artery, a partial kidney infarction, and ongoing chronic pain. So each day that I wake up and take a breath is a reminder of God’s unfathomable grace and love for me. VEDS has taught me to cherish every moment, to embrace the beauty of each day, and to be grateful for the simplest joys that life offers.

Rest is worship.

Living with an incurable genetic disorder has taught me that it is okay to prioritize rest. In a society that celebrates busyness this isn’t always easy, but for me it can be downright life-saving. When you live in a body with limitations you have to be intentional about setting your own limits. So I don’t say yes to all that I would like to do. And I don’t feel guilty about taking extended downtime after an event or anything else that requires extra energy resources.

Rest is worship. It’s a tangible acknowledgement to God that you trust Him, you know He is in control, and you are content with your life in His hands. So rest if you need it today. Rest even if you don’t need it. The world will be waiting for you when you return.

Hard stories are a crash-course in wisdom.

Hard stories can catapult us into a crash-course in wisdom. Mine was a scary diagnosis with life-limiting realities. You might not be living with an incurable disorder, but if you’re hanging around The Rescued Letters I imagine you have your own hard story, or love someone who does.

Hard stories force us to confront our own fears, vulnerabilities, and shortcomings. They prompt us to evaluate our choices, behaviors, and habits, and make necessary adjustments to live a more intentional and fulfilling life. We become acutely aware of the fleeting nature of time and the urgency to make the most of every moment.

Ultimately, hard stories prompt us to pursue hope and truth and cling to what is good.

Perspective to Choose What Matters and What Doesn’t.

In the days before my diagnosis, I remember worrying over decisions that hardly seem important now. There is something about facing your own mortality every day that brings perspective over what matters and what doesn’t. Hard stories help us see beyond the surface-level concerns and trivialities that once consumed our thoughts. Deepening your faith and relationship with Jesus, time with loved ones, working towards God’s calling on your life, practicing gratitude, finding the extraordinary in the ordinary…these things matter.

Hard stories can cultivate deeper intimacy and joy with Jesus.

We typically associate the word abundance with lavish wealth, food indulgence, or an oversupply of provisions. So when our earthly-trained minds consider John 10:10, it is tempting to jump to the conclusion that life with Jesus means we will have abundance of these things. But Jesus communicates two truths in this verse: (1) that Jesus is the only way to eternal life, and (2) that life with Jesus is meant to reflect the joy originally found in the garden of Eden. Abundance in God’s kingdom equates to spiritual blessings, not earthly ones. The truth of John 10:10 means that when I suffer from chronic pain, Jesus gives me an abundance of grace and endurance to persevere. It means that when humans disappoint me, I can turn to and trust in the unchanging goodness of my Savior. It means that joy, pure and overflowing joy, is possible, even in impossible circumstances.

I like how Matt Carter and Josh Wredberg describe this in Exalting Jesus in John:

He promises the closer we walk with him and the more intimately we follow him, the greater our joy will be and the fuller our lives will be. Jesus didn’t call us out of the emptiness of sin to live in mediocrity. He called us to feast at his table, to rejoice in his presence.

My hard story called me into a deeper relationship with Jesus, because in Him I found my true source of joy, one not dependent on my circumstances but rooted in Jesus’ abundant love.

So, now I turn the question to you. What is God teaching you? I want to invite you to reflect on the lessons you may be learning in this season. If you need a little help with that, I’d love to walk through Naomi’s story with you in my four-week Bible study, Renewed: Finding Hope When You Don’t Like Your Story.

I wrote Renewed for any woman that is carrying a difficult and life-altering story. I wrote it for the woman who is not just walking through a season of hardship, but who has experienced a story that they did not choose and cannot change.

I also wrote it for the woman who yearns to trust God’s sovereignty and His plan for her life even as she grieves and is angered by her circumstances. Trusting God and grieving your story are not mutually exclusive. Renewed is for the woman who needs an honest space to do both as God fills them with hope.

Remember, you are not alone. Together, we can find hope and strength in God’s wisdom and grace. While hard stories may present daunting challenges, they also open our eyes to the beauty in the simplest moments and the depth of God’s love. Let us cling to faith, embrace wisdom, and live each day to its fullest, trusting in God’s purpose for our lives.

I hope these words serve as a reminder that our trials can be stepping stones toward wisdom, drawing us closer to the One who knows all things. Together, let us navigate life’s challenges with grace, courage, and hope, trusting that in God’s hands, there is always purpose and meaning to be found.

I am rooting for you, always.

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