How God Unexpectedly Transformed my Faith through Rare Disease

By Erica Baldwin

This is the latest post in a series where guest bloggers share how God has shown up in the stories they never expected to live. May these stories stir you toward hope and give you a glimpse of God’s goodness. Read previously published stories here.

Meeting new people is always a little strange for me. I’m an extrovert who likes to put it all on the table – but I find myself not wanting to overwhelm acquaintances or new friends. You see, I carry this hard-to-pronounce label around with me – Vascular Ehlers-Danlos Syndrome (VEDS) that holds an iceberg of medical trauma hidden beneath surface smiles and small talk.

Diagnosed at the age of 33 after several life-threatening events, VEDS is an incurable connective tissue disorder that means the very building blocks of my body are fragile. My organs are prone to rupture and my arteries are susceptible to aneurysms. I’d never heard of the rare disease, affecting about 1 in 200,000, until doctors were trying to connect all the dots of my complicated medical history:

+ A spontaneous ruptured colon at age 20

+ Weak tissues that were difficult to reattach

+ Easy bruising my entire life

+ Dying intestines and a ruptured uterus during childbirth, when I nearly bled out and awoke in ICU with a breathing tube, drains, and IVs

+ Multiple aneurysms discovered in my body just a week after delivering my son

+ Two separate months-long periods of exclusive IV feeding due to unhealed intestines

Not exactly nice-to-meet-you conversation topics, right? But, miraculously, God has sustained me to raise our son (who’s now nine) and continue to be a wife, friend, daughter, church member, and living testimony for Him … and He’s even allowed me to make a few new friends along the way.

My rare disease presents daily challenges – from lack of energy and the need to keep my heart rate low – to life-saving management. Any sudden, persistent pain needs to be checked out at the hospital. I have yearly scans to monitor current aneurysms and check for new ones. I’ve needed several surgeries on my fragile arteries – including fixing the golf-ball sized aneurysm on my carotid artery that was feeding my brain, only three months after our son was born.

Unexpected Strength for Today

We were literally managing life and death decisions during the months following our son’s birth. At the age of 33, we created a will and a health care power of attorney. During the days of more scans and managing one emergency to the next, God’s presence was evident. I had little physical strength – sitting up in a chair or a painfully slow lap around the ICU was a victory.

But God gave us supernatural strength beyond our own. He supplied it in the coos of our newborn, my husband’s constant presence and advocacy, the stream of visits from loved ones, the ladies who cleaned our house or watched our dog, the friends who became like family.

When we had zero endurance, loved ones held up our arms in this fight for us, like Aaron and Hur holding up Moses’s hands during battle (Exodus 17:8-13). Ladies from church, some of whom we barely knew, came in on rotation to watch our baby while I rested, washed my hair, and was attended to by a home-health nurse so my husband could return to work a few hours a day. My extrovert heart needed those visits.

The prayers of others were constant when our prayers were desperate cries of “Help us, God!” We have never been more aware of the Holy Spirit interceding for us than during my initial diagnosis and that terrifying first year (Romans 8:26-27). Yes, we were scared, but God’s presence meant we didn’t have to despair.

It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed. Deuteronomy 31:8

Unrestrained Hope for Tomorrow

God has used this diagnosis to replace my fragile faith with firm hope. What was once circumstance-based trust is now confidence in God’s character and in His ways. Though tomorrow is not a guarantee for any of us, VEDS has made me acutely aware of my mortality – but I do not fear the future.

Nine years ago, I would not have been able to say that. But God has used this time to teach me that He is good and that trusting His goodness does not disappoint (Romans 5:5).

You are good and do good; teach me your statutes. Psalm 119:68

God’s goodness is not a platitude, but a prescription of hope. God’s goodness is not a band-aid, but an antiseptic to clean out shallow faith, pride, and love for this world.

I pray I can honor God through this hard story of living with a rare disease. And if I meet you on the street or over coffee, I pray we can swap stories, scars and all, of God’s goodness in the unexpected.

One generation shall commend your works to another, and shall declare your mighty acts. They shall pour forth the fame of your abundant goodness. Psalm 145:4,7a

About the Author

Erica Baldwin discovered the depths of God’s goodness when, at the age of 33, she was diagnosed with an incurable, life-threatening genetic connective tissue disorder. She gradually traded in her faith in the good life for trust in a good God. Erica lives in North Carolina with her husband and their nine-year-old miracle son. She loves spontaneous fun with family (like board games and bike rides), long coffee dates with friends, and salty snacks. You can find her sharing God’s goodness in the midst of life’s hardest trials on her blog ohhisgoodness.com, her Facebook group, and Instagram. 

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