Lisa Clinedinst

Fisherville, VA
@lhm24401
Twist: Living with systemic mastocytosis has been a journey I never expected — one that’s tested my strength in ways both physical and emotional. One of the most difficult consequences has been developing severe osteoporosis, which led to multiple fractured vertebrae. The pain, the limitations, and the constant recalibration of what “normal” looks like have forced me to rethink everything — from how I move through the world to how I care for myself.
Lessons Learned:
I’ve learned that resilience isn’t always loud or heroic — sometimes it’s just getting out of bed, advocating for yourself at a doctor’s appointment, or finding a way to smile through the pain. I’ve also learned that being rare doesn’t mean being invisible or alone. I appreciate the connections I’ve made through the Colors of SM.
Strategies That Help:
Managing systemic mastocytosis requires constant vigilance. I’ve built a toolkit of strategies —working closely with specialists who understand the complexity of this disorder, physical therapy, proper medication, and pacing myself have become essential. But just as important are the emotional tools: leaning on support networks, practicing self-compassion, and allowing myself to grieve the losses while still celebrating the wins.
New Perspectives:
This experience has taught me to value the quiet victories — the days when I can walk a little farther, laugh a little louder, or simply feel like myself. It’s given me a deeper empathy for others living with invisible illnesses. I’ve come to see strength not as the absence of struggle, but as the courage to keep going in spite of it.
Systemic mastocytosis may have fractured my bones, but it’s also revealed the unbreakable parts of me — the ones that adapt, endure, and keep showing up.