Guest Post by Erica Baldwin

Vascular Ehlers-Danlos Syndrome. Say that three times fast.

It’s the name of the condition I carry deep in my genetic code and with it the daily burden threatening to deplete my joy and purpose. It’s a rare disease — one I often have to pronounce for new doctors or spell out when I check in to the emergency department, along with handing over a brochure on my condition and the four-page (abridged) health history I keep in my purse.

Maybe you carry the weight of a hard-to-say, even-harder-to-explain rare disease. Maybe your diagnosis isn’t even named yet and you’re in a frustrating cycle of doctors’ visits, tests, and endless waiting. With all of the appointments and daily management of our disease, we can easily let these identifications become our identity. We can let our limitations become our labels. We can allow our diagnosis to become our sole descriptor.

But for those of us who are in Christ, our identity is defined by the One who bought our redemption for a price (1 Corinthians 6:19-20). Elevation of any other identity creates false security and pride, yes even pride in our weakness or strength in overcoming our rare disease.

From doctor’s appointments to managing symptoms to worrying about the future, our rare disease can take up a lot of our time. But it must not take preeminence in our hearts.

“To find your identity, worth, and value in anything other than Jesus Christ is to believe that your distinguished career, your prized pet, your parenting skills, your valiant victory over cancer and quadriplegia, [the battle with your rare disease], or your sin itself makes life more meaningful, rich, or fulfilling. But Christian, your identity must never be in things that compete for space in your heart,” says Joni Eareckson Tada, a quadriplegic who’s spent her life ministering to those with disabilities and sharing hope through hardship. “Only in Christ do we find breathlessly fulfilling joy, peace, and meaning.”

In your weakness, sister, you can magnify God’s great name. You can turn your worry and your future over to the One who knows all about you and sympathizes with your weaknesses (Hebrews 4:15). You can pour out your heart to him (Psalm 62:8) and cast your cares on Him (1 Peter 5:7). Then turn your heart to gratitude that your identity is securely in Christ. In John 10:28 Jesus reminds us: “I give them eternal life, and they will never perish, and no one will snatch them out of my hand.”

As the classic hymn goes:

Turn your eyes upon Jesus

Look full in his wonderful face

And the things of earth will grow strangely dim

In the light of his glory and grace.

What is one “label” in Christ that you are grateful for (ex. chosen, secure, beloved, daughter, co-heir, forgiven, adopted)? Look up a corresponding Bible verse, ponder it, and express gratitude for how Christ’s sacrifice secured that identity for you.

Diagnosed at the age of 33 with an incurable genetic condition (Vascular Ehlers-Danlos Syndrome), Erica Baldwin blogs at OhHisGoodness.com to encourage women to trust God’s goodness as they face life’s impossible. She lives in North Carolina with her ever-detailed husband and their miracle son who keeps her on her toes. Erica loves salty snacks, Hallmark movies, and listening to others’ stories of resilience. She treasures every “normal” day as a gift, especially days that begin with coffee and end with her family cuddling on the couch.