Call Me “Em-Kas”
Why I’m relieved MCAS is such an awkward acronym.
Reading time: 3-4 minutes (depending on brain fog)
I have a nickname. It was unceremoniously bestowed upon me years ago by my then 4-year-old nephew. He couldn’t manage many of the consonants in Christopher so began to address me as “Tittifer”. I decided to find it cute - that was until other members of my family abbreviated it further to “Titti”.
I was not impressed. It’s a nickname that haunts me to this day.
Names matter. Your name is arguably the biggest, most immediate part of your identity and yet, you don’t get to choose your own, it’s chosen for you. All you can really do is hope you like the one you’ve been given.
Admittedly, that first day of school when you meet someone with the same name as you is always magical. You’ve found your kindred spirit.
But soon enough, you naturally, unconsciously detach from your namesake. Your names may be the same but your personalities and interests aren’t. A name is not as strong a social glue as it initially appears.
“I won’t lie. It rubbed me up the wrong way.”
I was diagnosed with Mast Cell Activation Syndrome (MCAS) and PoTS at roughly the same time. When I was diagnosed with PoTS however, someone referred to me as a “Potsie” - I’d apparently been given a new name and identity I didn’t ask for.
I won’t lie. It rubbed me up the wrong way.
If you’re unfamiliar with the term, a “Potsie” is anyone who has Postural Orthostatic Tachycardia Syndrome or, because it’s such a pain to say, PoTS for short (the lowercase ‘o’ is meant to help distinguish the condition from the noun).
There are Potsies everywhere and, if you’re reading this, you may even be one yourself.
I totally understand why you’d use a nickname like Potsie. Postural Orthostatic Tachycardia Syndrome, ironically, is characterised by extreme mental fatigue yet requires enormous mental energy to pronounce. For many people, too, it’s about a sense of belonging. After years of being dismissed, disbelieved and misdiagnosed you finally feel seen. Validated. When you get that label it actually feels like more of a relief than a terrible blow. You feel like you’ve found ‘your people’.
“some of us would prefer to keep our own name thanks.”
For every person I meet with PoTS who happily identifies as a Potsie, I’ll inevitably meet another who definitely doesn’t. I’m the latter, not the former.
I’ve no issue with anyone who identifies as a Potsie in the slightest - this sort of thing is deeply personal and reflects your own thoughts, feelings and the journey you’re on.
But some of us would prefer to keep our own name thanks.
For me, and this is a personal thing, PoTS is a monumental pain in the arse. It makes me cranky and tense all the time, forces me to waterboard myself with electrolytes on the daily and has turned stairs into my arch nemesis. Forgive me, but as an active participant in this shit show, I don’t want or need a cute name to soften the blow.
And if I must be labelled or otherwise re-named surely something like “face-planter”, “floor inspector” or “professional fainter” would be more apt, no?
I have PoTS. I’m part of the PoTS community (we don’t sit around smoking weed as the name would suggest). But I’m not PoTS itself. My name doesn’t need to be erased and replaced with a label that, for me, does little more than invite stereotypes.
I’m not rejecting my condition, but I’m not embracing it either and like so many things in life, I think it’s about finding that middle ground. Research shows that flat-out rejecting your condition is often just as bad as over-identifying with it and the sweet spot, if we can call it that, is a combination acceptance - acknowledging it without letting it consume you, or enrichment - finding meaning through your condition without making it your identity.
As I’ve said, this stuff is personal and being diagnosed with any illness can shake your sense of self to the core. I’ve certainly stumbled my way through that obstacle course. But a diagnosis, any diagnosis, doesn’t mean you have to give up your sense of self or jettison your personality in order to be part of the crowd.
Thank f**k MCAS is such an awkward acronym - one more cute nickname might send me and my party-hard mast cells over the edge. ◼
M. //
