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The POTS Puzzle: Separating the PA From the Patient

But why should I?

Separate the two, that is…

I’ve learned the tedious, cumbersome way that trying to separate the PA (the physician assistant, me) from the PAtient (the postural orthostatic tachycardia syndrome patient, also me) is as far-fetched as pulling apart the slices of a peanut butter and jelly sandwich, and managing to get away with one clean slice of peanut butter bread and one of jelly. Those sides are going to be covered with one another’s goodness; it’s just what happens… and it’s not at all bad. Similarly, trying to separate the PA from the PAtient is counterproductive here, though I did give it a good college try.

When I walk into a doctor appointment, I’m not only a PA, I’m also a patient; I am usually treated just as any other patient would be treated. When I see my own patients in the office, I’m not just a PA, again, I am also a patient, one who can resonate so earnestly with what a patient may be experiencing there on the other end. And yes, I want him or her to be well just as I want to be well. I’ve got their best at heart.

As a patient: it is both exhausting and discouraging to wait weeks (and then months) without a helpful diagnostic answer. To be told I “look like [I’m] having a panic attack” when in fact my nervous system is misbehaving, throwing us all out of sorts.

As a PA: it is humbling to reflect on how we (or some of “we,” as providers) may confidently presume to know more about what’s going on with a patient than the patient could possibly know about herself. After all, I went to graduate school for this!

As a patient: it is almost laughable (at this point) to have foolishly chosen the high-deductible health insurance plan again, only to have met the entire deductible before February came and went. (But I’m 28 and healthy, right?)

As a PA: it is painful to disappoint patients and coworkers due to an unpredictable, unchosen, illness that at times, creates limits and leads to humbling unreliability.

As a patient: I’m surprised by the stereotypes that have unraveled before my eyes. Stereotypes I had personally built up about, you name it: medical professionals, specialists, office staff. I’ve been surprised in the best ways (for the most part)!

As a PA: I’m overwhelmed when I reflect on the unwavering support/medical discerning/appointment making/sheer kindness of my workplace friends. Equally humbling and wonderful. These memories will stay with me for good.

As a patient: it’s truly awkward and unnatural to “accept” or incorporate an illness into my life when I in no way chose or wanted to have POTS.

As a PA: it is incredible – life-changing – to fully experience empathy for what must be the first time.

As a patient: it is a daily discipline (OK, struggle!) learning how to rest. Actually rest. I’ve found out that resting doesn’t include Google, sorting through bills or investigating my skin for new spots or rashes.

As a PA: it is easy fool oneself into thinking you’re a “good” patient when you’re actually notoriously bad at this.

As a patient: it’s challenging to know who you can trust when it comes to your health and well-being.

As a PA: it is overwhelmingly obvious to determine which providers are truly competent, good at listening and most importantly, trustworthy.

As a patient now bouncing back from the phenomena that is POTS, I would love nothing more than to rest (actually rest), to find the perfect treatment regimen for me, to thank all those who surely need my thanking, then finally to “get back on my feet.” How easy it could be, in theory, to move on after this, especially when we’re dealing with an invisible, widely unheard of illness. It leaves little trace on strangers’ eyes and ears, usually.

As a PA, committed to serving others and providing “quality-of-life giving care” (quoted straight from my ever-dreaded resume), I simply cannot envision moving forward without contributing to this “POTS Puzzle” in some form or fashion.

POTS has taken so much, but in exchange, POTS has granted me a perspective I otherwise may still be unaware of. I’ve heard it said and I agree that it’s impossible to care about something you don’t know about. Until recently, I knew very little about postural orthostatic tachycardia syndrome. As a physician assistant, whose full-time job is to diagnose and treat, POTS had been staring me in the face but I did not see it, and therefore I did not care much about it.

Although the brunt of my symptoms made their debut during the past six months, I can look back on certain times when, here or there, a little POTS preview sneakily got its invisible foot in the door: that time in college eight years ago, when I found out my gallbladder functions at a mere 12 percent (still going strong). Or that summer three hot Augusts ago, when all fun and games at my best friend’s wedding were cut short, after nearly fainting as a bridesmaid during the ceremony, then nursing a wicked case of dehydration in a hotel bed during her reception (Hello, POTS! You fun stealer, you).

While I was unaware of POTS in the past, now I’m full of scattered personal reflections, obscure experiences, numerous medical literature tidbits, information about patient advocacy programs and overwhelmingly helpful resources. My mind is jam-packed with these similar to the way that a puzzle is when it first comes out of the box: messy, exciting, daunting, time-consuming, mentally engaging, frustrating, even.

So, I’ve opened up the box of puzzle pieces, scattered throughout in no particular pattern. I even have the majority of edge pieces in their rightful spots, at this point. With about 900 pieces left to join together, today I feel positively certain that the completed picture of POTS will be ready before too long… and it’s not invisible at all.

Getty Image by Burhanuddin Helmi

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