Patient Journey with Multiple Rare Diagnoses: “This. Isn’t. My. Body.”

March 21, 2024

Meredith has been diagnosed with a number of rare conditions, including Hypermobile Ehlers-Danlos syndrome, Alpha-1 Antitrypsin deficiency, Postural Orthostatic Tachycardia syndrome, as well as chronic migraine, Polycystic Ovarian syndrome, and Ulcerative Colitis, and hopes her story will help others in the rare disease community.

My legs felt like thick, immovable tree trunks as I shakily shuffled down the long, cold hospital hallway in my chafing hospital gown and ill-fitting non-skid socks, pulling my stubborn and squeaky IV pole alongside me. My mom took small, measured steps next to me as we took our daily walk around the hospital floor to escape from my cramped, confining hospital room.

Now several weeks into my first hospitalization after being diagnosed with severe ulcerative colitis via emergency colonoscopy, we had added this evening walk into our hospital routine. Summoning all the energy my exhausted body, at war with itself, could muster, we rounded the corner at the end of the hallway and reached the bench near the pediatric transplant ward – our destination.

A heavy, all-consuming wave of frustration, hopelessness, and grief crashed upon me, making me collapse onto the bench with my head hung and shoulders slumped. I broke down sobbing as I choked out to my mom, “This. Isn’t. My. Body.”

The IV steroids pumping through my body to stop my immune system from attacking my large intestine had turned me into some sluggish, engorged creature I didn’t recognize. My once-muscular dancer legs looked like giant sausages that were close to bursting. This new body was so unsteady and heavy, I felt like I was trapped at the bottom of the ocean, weighed down by cinderblocks. Just days before I had been so malnourished and the skinniest I’d ever been – my generous curves had disappeared and I didn’t recognize myself. Now having swung to the opposite end of the spectrum, I didn’t know how to move this unnatural-feeling body. It was like it belonged to someone else.

As I tried to suck in air between sobs, my usually very stoic and non-touchy-feely mother sat down next to me, wrapped her tiny arm around my shoulder and quietly murmured, “I know. I know.” and began crying too.

This is a moment I’ll always remember — an unexpected, spontaneous moment of confusion and deep mourning when I realized that my body, and life, would never be the same again.

This is life living with chronic illness – a reality that few people witness and fewer understand. This “invisibility” is why we share our stories. This is why I share my story.

See Meredith’s LinkedIn post

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