When faced with the overwhelming reality of a chronic illness diagnosis, it's easy to question everything. The journey our family has been on since my diagnosis with Sjogren's syndrome and other inflammatory conditions hasn't been one I would have chosen, but it has revealed strengths I never knew we had.
The Diagnosis That Changed Everything
Three years ago, after months of unexplained symptoms and countless doctor visits, I finally received the diagnosis that would change our family forever. Autoimmune diseases are particularly challenging because they're invisible to others—you often look perfectly healthy on the outside while your body wages war against itself from within.
For our family, this meant reimagining what daily life would look like. Simple activities became carefully planned events. Homeschooling our children required new approaches. Every aspect of our lives needed to be reconsidered through the lens of unpredictable health.
Faith is not about everything turning out OK; faith is about being OK no matter how things turn out.
Finding Purpose in Pain
There's a common misconception that faith means you'll be protected from suffering. Our experience has been quite different—faith doesn't eliminate suffering but gives it meaning and purpose. When I couldn't understand why this was happening to our family, faith provided the framework to see beyond the immediate pain.
We've discovered that our journey has uniquely positioned us to support others. Through Anchor and Bloom, we've been able to create resources for families navigating similar challenges—whether health-related, homeschooling with ADHD children, or simply trying to bring order to chaotic lives.
Practical Faith Through Daily Challenges
Faith, for our family, isn't just about belief—it's practical. Here are some ways we integrate faith into our health journey:
- Morning gratitude practice — Even on the most difficult days, we begin by acknowledging what's going well
- Community support — Allowing others to help during flare-ups rather than struggling alone
- Finding purpose — Using our experience to create resources that help others
- Celebrating small victories — Recognizing progress in even the smallest improvements
- Honest conversations — Creating space for family members to express frustration and fear
Teaching Our Children Through Adversity
Perhaps the most powerful aspect of this journey has been what it's teaching our children. Jackson and Finley are growing up with a deep understanding of empathy, resilience, and faith that no textbook could provide. They've learned to adapt plans when mom is having a bad day, to take on responsibilities beyond their years, and to see the value in supporting others through difficult times.
When Jackson created his first 3D printed adaptive tool to help me open jars on days when my hands weren't cooperating, I realized how profoundly our challenges were shaping his worldview and problem-solving skills.
The Journey Continues
Living with chronic illness means embracing uncertainty. There are good days and difficult ones. There are moments of frustration and moments of unexpected joy. Through it all, our faith reminds us that we're not alone in this journey—both spiritually and as a family supporting each other every step of the way.
If you're on a similar path with health challenges, I hope you'll find some encouragement here. The road isn't easy, but there is meaning to be found even in the most difficult circumstances. Our family has discovered that faith doesn't mean having all the answers—it means having peace even when the questions remain.
