Guest Writer Wednesday: Caitlin's Postural Orthostatic Tachycardia Syndrome Story

My high school flute-buddy, Caitlin, shares her story about living with an invisible medical condition called Postural Orthostatic Tachycardia Syndrome (POTS). She describes how it feels trying to make it through a day, while riding a roller coaster of unexpected symptoms and dealing with people’s surprised reactions since she “doesn’t look sick.” Caitlin’s guest writer post is definitely worth a read - she is witty and insightful and one of my favorite people from high school! Let’s welcome Caitlin to the Unicorn Mission! (PS: We were both taught how to write from the same teacher, Mr. Palagi, in our high school’s International Baccalaureate program. I have a feeling you’ll be able to sense this in our writing styles!) (Cover photo can be found here.)


It’s Only an Irritable Heart

“Here’s the thing: Susan has terminal cancer, but she’s here every day throwing up in a trash can and working through. You don’t even look sick, but you’re only here 75% of the time. This is a problem.” I slide a little lower in my chair as I sit across from my manager and try to brace for what I know is coming next without flinching noticeably.

Maybe if I’m lucky, there won’t be a bullet pointed list of my shortcomings and we can just move on to that sentence. The one that makes the bottom drop out of your stomach and your world come crashing down around you as you wonder how exactly you’re going to afford all your medicine with 1) no health insurance and 2) no income. As I try not to let my insides shrivel up into what I like to refer to as my “soul assuming the fetal position,” my manager then continues to list all the things he likes, and says “Which is what makes this next part so hard. We’re going to have to let you go”

Photo credit:  here

Photo credit: here

Yep, there it is. For the 7th time in 4 years, I’ve been fired. Not because I’m incompetent, not because I’m incapable, not because there’s actually anything wrong with the quality of my work. But my attendance? It’s “a problem.” It always is. This has been my life since 2013. Since that first round of “look you must just have an anxiety issue, take some chill pills and get your butt back to the office” that started this all. It took 2 grueling years (and 2 jobs….) before someone was finally smart enough to put a name to what was wrong. A diagnosis… both freeing and an unwieldy, mammoth sized weight permanently affixed to my ankle:

My unicorn’s name is “POTS.”  

A dysfunction (I think that’s more apt than “condition”) known to the medical community as Postural Orthostatic Tachycardia Syndrome, POTS is a syndrome that belongs in a family of syndromes (isn’t it cute that all “syndromes” have their own little herds they travel in?) known as autonomic dysfunction. This means the autonomic nervous system (your body’s autopilot) isn’t doing it’s job, and things like heart rate, blood pressure, breathing… all of a sudden aren’t being monitored. 

POTS is a nasty little gremlin that messes up the your cardiovascular system. The way I usually describe it to folks is as follows: 

  • Veins are actually supposed shrink up when change position so your blood pressure stays the same. But mine don’t.  So I sit up, or lean forward in my chair, or stand, and my blood pressure drops. This means that my brain doesn’t have enough oxygen… so my heart speeds up to pump more blood. But the amount of blood flowing doesn’t increase, so my heart speeds up even more. Then I start losing oxygen to other places, because not enough blood is flowing, and before I have even noticed I’m dizzy? I wake up on the floor because I’ve passed out.

What makes it so difficult to identify is that POTS doesn’t always start with fainting. Sometimes you just have what feels like a panic attack. Sometimes you just feel dizzy, or a little unsteady on your feet. Sometimes you’re just SO tired… so tired that even crying, eating, or showering takes too much energy to cope with. Sometimes you just ache all over, like you fell down the stairs, but you just woke up. Some patients only experience severe nausea, while others “only” get migraines as an indicator that something is wrong inside. Then there are those who are permanently bedridden because that’s the only way they can stay conscious. 

Image credit can be found  here

Image credit can be found here

Unfortunately, POTS is not a condition that’s widely recognized as being a problem. Despite having been identified in 1897 as “irritable heart syndrome”, western medicine didn’t treat it as more than being something more than a nuisance until 1993. There’s only one highly specialized type of cardiologist (called an electrophysiologist), or the rare well-informed neurologist that even treat the condition. Of those doctors who do work in these specialties, only a small percentage are informed about it, are willing to treat it, and recognize the condition as being potentially life altering. Pretty scary stuff…particularly since autonomic dysfunction affects over 70 MILLION PEOPLE worldwide. Pause for a minute to let that sink in. 70 million. POTS in particular is estimated to affect 1 in 100 people. One percent of the population. 

My experience with POTS is fraught with frustration, exhaustion, and anxiety.

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It’s like knowing a hurricane is coming, but you don’t know if and when it will hit, and all you can do is board up the windows, buy some sand bags, and hope for the best because you don’t have a car and all the food in the house makes you feel sick to your stomach. There are days when I can’t even form a coherent sentence, or  I can’t even get out of bed, but otherwise feel fine. There are days when I walk past an air conditioning vent at work and break out in hives. Oftentimes I can’t even wear shoes because my feet will swell so badly that not even my husband’s shoes fit, or the skin hurts so badly just touching them makes me cry. On the flip-side of this, there are days I can spend all day hiking, working with the dogs on new tricks, cooking up a storm, go to bed feeling relaxed, and wake up the next day feeling totally normal. 

I know what the symptoms are, and I know what my usual triggers are, and boy are they hard to manage. I know that some days I can just take 10g of sodium tablets and hydrate like crazy and be okay, while others I’m going to need 3 liters of IV saline and 6 pills just to be able to sit up. I know that if I get stressed and let things at work bother me, I’m likely to end up flat on my back for multiple days in a row. I know that if I play too much fetch with the dog and forgot the chuck-it stick, I won’t be able to drive home from the dog park. But the hardest part about having POTS is that I “don’t look sick.”

There are days when being told I don’t look sick doesn’t phase me. I shake it off and say, “Yes dahhhling, it’s better to look good than to feel good.” There are days when I’m happy to explain that yes, I look totally healthy, I’ve even got a rosy flush to my cheeks, but I’ve got tunnel vision on and off and I know if you ask me to run to the copier I’m will probably fall over in a dead faint.

Then there are the days where someone has just pointed out the one thing I like least about myself…insinuated that they ALSO see it as a flaw, and boy does that hurt. This is usually followed up with a snarky comment suggesting you’re just being lazy, or a slacker. I can see on their face that if it were up to them, I’d be getting voted off the island. I am the weakest link, goodbye. 

Image credit can be found  here

Image credit can be found here

As many of you know, when you’re a unicorn owner (I don’t like the word different, it’s just so isolating), you often want nothing more than to be just like everybody else. Able to pop up out of bed on time, shuffle to work, get through the day, go home, have adventures on the weekends…all of these things sound like heaven. But experienced unicorn owners can tell you, sometimes finding a day where you’re able to be just like everyone else? Is like actually finding a unicorn.

I wear a special bracelet that says “just breathe”  to remind me every day that no matter what someone else thinks, or sees, I’m doing the best I can, I’m no longer trapped in that bed, and I no longer have to spend 12 hours a week getting IV saline. Whenever someone says I don’t look sick, I take a deep breath, smile (because that releases those happy endorphins!), and say, “Thanks, I’m glad you think I look healthy today.” But other days, my irritable heart runs the show. 

So now it’s your turn, dear unicorn owners, should you desire to share.

What is the sentence that most sets off your irritable heart, gets under your skin, causes your soul to curl up in a little ball?  What are the things you do to remind yourself that it’s okay to be flawed, and your difference is actually what makes you a unicorn instead of a horse?

Photo credit can be found  here

Photo credit can be found here

*As an aside, I am not a physician. I did my best to only give you facts and to keep them accurate, but my description of this condition is absolutely colored by the fact that I live with it. Thus, if you are interested in autonomic dysfunction, or POTS, you can find more information here, at Dysautonomia International’s website.

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Bio:

Caitlin is a dog loving, book hoarding engineer who lives inside a yarn habitat where the crafts spread like tribbles. She is happy to report that she currently has stable employment, which allows the dogs to live in the luxurious lifestyle to which they have become accustomed. 

  

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