Embracing Uncertainty

Navigating the Unknown’s of a Rare Disease Diagnosis

The author at Canyonlands National Park the summer before her rare disease diagnosis.

Imagine you’re having a conversation when you notice that your mouth feels heavy, that your lips are slow to respond, and that your tongue gets in the way of forming words. As you sense weakness settling into your jaw, you recognize the tell-tale signs of a flare taking hold. If you don’t sit soon, your neck, shoulders, and back will…