09/27/2026
As many of you know, I am living with Ehlers-Danlos Syndrome (EDS). This means I try to manage a systemic condition that affects collagen; the structural "glue" that holds together skin, joints, muscles, blood vessels, and internal organs. Because my body's collagen is fragile and overly flexible, my ligaments cannot hold my joints securely, causing daily subluxations (partial dislocations) where bones slip out of socket. To keep my skeleton aligned, my muscles are forced into continuous, exhausting spasms just to do the job my ligaments cannot. This relentless mechanical stress causes constant chronic pain and rapid muscle fatigue similar to Myasthenia Gravis, while flexible tissue in my cardiovascular system can lead to leaky heart valves and blood pressure regulation struggles.
Because collagen surrounds nerves and blood vessels throughout the body, the impact extends deeply into the nervous system as well. Spinal instability, nerve irritation, and autonomic dysregulation create numbness, electric tingling, and balance disturbances that closely mirror Multiple Sclerosis. Furthermore, the constant barrage of pain signals, combined with shifts in brain grey matter in regions that process sensory input and pain, leads to profound physical and cognitive fatigue. Because EDS is largely an invisible condition, my physical capacity can vary from day to day even when I look completely healthy on the outside. Understanding this dynamic helps explain the careful balance I maintain behind the scenes, and I am deeply grateful for your empathy, grace, and continued support during this flare up.
