02/28/2026
A whimsical outfit to talk about a very serious subject 💄
It’s Rare Disease Day, and that has me thinking about under-diagnosis.
Some diseases are rare because very few people have them, while some feel rare because they’re rarely recognized.
Like many people with chronic illness, I could give you a list of diagnoses. When someone asks “what are you sick with?”, I usually say the conditions that cause me the most day-to-day symptoms are MCAS, dysautonomia, and ME/CFS, but that’s nowhere near the full list that’s accumulated in my chart over the years.
Here’s the part we don’t talk about enough:
While medical professionals debate which label fits best, many of us are still left without meaningful care, because the diagnostic criteria for some of these diseases are incredibly difficult to meet.
Sometimes the “gold standard” test is invasive and not something our bodies can safely tolerate. Sometimes the labs only show abnormalities during extreme flares - which are exactly the moments we are physically incapable of getting to a testing facility.
So what happens?
We end up with large groups of people who are under-diagnosed. Conditions labeled “rare” that may not actually be rare - just under-studied, under-recognized, and structurally difficult to confirm.
And at the end of the day, while a diagnosis CAN be incredibly valuable, meaningful, and lead to better management of an illness, so many of us find ourselves stuck in this limbo of a label that doctors aren’t willing to work with and symptoms that are still debilitating and devastating.
And for most of us, we don’t actually care about the label – we just want a better quality of life 💋