Arley, meet Henson.

A funny thing about human nature. From birth, we are driven by the uniqueness of our selves; the sense that we are “the only one” (some more afflicted so than others, unfortunately). But in the most healthy way, feeling special or one-of-a-kind buoys us through the sandlot, the purgatory of prepubescence known as middle school, and on through college where we truly test the boundaries of self.

So what happens if you add a rare disease or unique medical experience into the picture? This uniqueness of self becomes magnified, in many ways, to a terrifying degree. They are the definition of “alone,” these rare disease diagnoses.

I experienced that degree of aloneness when diagnosed with spontaneous coronary artery dissection (SCAD). But I was convinced I was not the only one. Despite doctors’ assurances, I just knew I was one of many. Whether this was my upbringing by solid mid-westerners or poor self-esteem at the time, regardless, I just knew I wasn’t “all that.” This acceptance (or perhaps, defiance) is what started the search to find others, and I’m so thankful I did.

Today, more than 330 SCAD survivors are connected via the WomenHeart online community and facebook. But this tally doesn’t include dozens who have approached Mayo Clinic directly to participate in the SCAD clinical trials underway there.

In a happily-ever-after twist — as my dog, Arley, recently learned — I’m not all that. I’m one of many, and very grateful to be so.

Advertisements