If I had a nickel for every time someone stared – no, ogled – at me with wide eyes and asked me what happened, I would be a rich woman.
For the past few weeks, my body has embraced the appearance of taking a tumble down a rocky hillside. Large patches of my body are covered in deep, gnarly bruises that are painful to the touch. It’s a more artistic (a la fingerpainting two year old, not Rembrandt) manifestation of EDS that paints one’s body in shades of purple, yellow, and green. I don’t know what causes them, I don’t know why they’re located where they are, and I don’t know how to stop developing them. It’s cyclical – they arise overnight and linger for weeks, and I essentially become a human peach, bruising at every touch. Once subsided, some unpredictable amount of time passes before the next wave appears. While EDS is considered an “invisible illness” for many reasons, this is likely the most outwardly apparent physical manifestation for Zebras with hypermobile, classical, or vascular EDS (shy of repeatedly dislocating a joint!).
It’s understandable that seeing someone covered in bruises is concerning; I’m grateful that people in my life care enough to check in and make sure things are OK. Strangers who pry, however, frustrate me to no end. Regardless of the inquirer, I typically respond with a simple “this just happens” and an additional wisecrack, and may allude to a medical condition pending my relationship with the individual. Some people refuse to accept that as an adequate answer, trampling over all boundaries and demanding I explain why I’m painted like a Jackson Pollock in his blue period. Many will make jokes about my boyfriend (this is the quickest way to infuriate me and lose my respect, by the way) or ask me if I was in a bar fight or use whatever other clichéd wisecrack they can think of. The simplest and most consistent way of shutting them up is telling them I have a medical condition, and this usually yields drastic back pedaling. Sometimes it backfires and the individual begins to pry into my circumstances not out of true interest, but for the sake of snooping.
As you all know, I don’t mind discussing this stuff, especially if the other party is genuinely interested. I wouldn’t have this blog otherwise. But explaining the same phenomenon to multiple people (read: strangers) each day is exhausting. Hearing the same wisecracks over and over is exhausting. Being stared at with pitiful faces is exhausting. I’ll gladly go down the rabbit hole of discussing EDS with anyone who wants to learn about it or get to know me, but it’s infinitely frustrating to be approached by people digging for answers only to assuage their curiosities and ponderings about my ubiquitous bruises. I’ve taken to wearing leggings most days, even in the heat (and they serve as pseudo-compression gear – score for the POTSie!) not because I’m ashamed or self conscious, but because I want to limit the number of eyes chasing my purple shins and thighs as I walk by and the intrusive interrogations that typically follow.
I think I’m going to start charging a nickel for an explanation.
Bonus photos: My arm after a single fencing practice drill in 2012. These bruises took over a month to subside.