Ok, maybe I’m having a panic attack.
No, no, it’s not. It’s just my chronic illness affecting my heart function.
Ok, ok, it’s a panic attack.
Just a teensy, eensy one though…
Everyone gets nervous sometimes.
Sometimes, this nervousness gets slightly out of hand.
Occasionally, this slightly out of hand nervousness comes on suddenly, seemingly out of nowhere, and strangles you, dragging you deep down into the dark blue depths of an ocean of fear and terror.
Not that I would know or anything.
I’ve got a medical condition.
I am not crazy.
Except that I am highly neurotic.
It’s a struggle for me to accept any hint of anxiety, and I have Good Reason (which is just something people say when they are Rationalizing).
According to a POTS patient survey by Dysautonomia International, in a group of 700, a whopping 69% were diagnosed with an anxiety disorder before they were diagnosed with POTS. That same survey showed that the average “diagnostic delay” for POTSies is 5 years, 11 months. Coincidently, 59% reported that before they were correctly diagnosed with POTS, they had been told by one or more doctors that their symptoms were “all in your head.”
To a POTS patient, being told you are Anxious before you are told you are POTSie means that you will have to continue to wait to find out the truth behind your debilitating symptoms. To a POTS patient, being labeled “anxious” is the same as being Dismissed.
It took 6 years and 3 months before I was properly diagnosed with POTS. December 2002 (I was 13) to February 2009 (a week after my 20th birthday). That is a looooooong time, let me tell you.
What exactly was going on in the meantime?
<This is the short version> Well, my first cardiologist told me that I had a rare fainting disorder and that I was the only patient of his who had it (which to a 13 year old means, I am the ONLY ONE in the WHOLE WORLD who has this). His infinite wisdom was that pretzels and Gatorade would cure it (which helps, but does not cure). When my Costco sized jugs of salty snacks and electrolyte drinks didn’t make it go away, my doctors decided to attribute my ongoing symptoms not to afor mentioned rare fainting disorder, but to being in the midst of some sort of anxious meltdown.
Which eventually came true. Because “If you build it, he will come” applies to a lot more situations than just building a baseball diamond in your corn field so you can play catch with your dead father (Sorry for the random Field of Dreams reference. But it applies, doesn’t it?).
If you keep telling someone they are anxious, you will make them anxious.
The result: If you were friends with me from 8th grade to sophomore year of college, when I canceled plans with you (which was a “when” not an “if”), I probably told you it was because it was too anxiety provoking to go to the mall, when the reality was that my heart was beating near or above the 200bpm range (that’s HULK pulse, for those of you keeping track. See Avengers, Assemble, July 21) on a regular basis, I just didn’t know it. NO ONE wants to go to Forever 21 like that. Sorry, 5-12 years too late!
According to WebMd, everyone’s favorite source of medical info, the symptoms of a panic attack are:
~Feeling faint or dizzy
~Feeling sweaty or having chills
~Feeling of loss of control
According to DYNA, Inc. on their website, www.dynainc.org, the symptoms of POTS include (but are definitely not limited to, this is just a short list to make a point):
~Fast heart rate (tachycardia)
~Chest discomfort and palpitations
~Shortness of breath
I don’t think it’s a stretch to add “feeling of loss of control” to that list.
So it can be really confusing, for doctors (though don’t think I’m cutting them any slack-I get real cranky when I think about/hear about/come in contact with dismissive medical professionals), and for patients.
When I finally (finally!) was diagnosed with POTS in 2009, I spent a blissful 2 months anxiety free. I was put on medication that drastically changed the amount of symptoms I experienced for the better, and the peace of mind of knowing was like a high that I thought would never end.
Except, honeymoons don’t last forever, whether you are newly wed or newly diagnosed.
Part of the problem is that I developed a nasty habit in those 6 years and 3 months of giving in to “What If” thinking. I am a horrible What If-er.
What if I faint?
What if I faint when______?
What if I don’t feel good, or I look weird, or I stop making sense, or I make a fool of myself?
What if people notice? What if they are mean to me or make fun of me?
What if? What if? What if?
Unfortunately there is not a medication that can make that go away.
There is, of course, therapy, which I highly recommend.
There is also writing about it on the Internet for all to see, which I also highly recommend.
Seriously, something about telling people I am anxious makes me feel less anxious.
I’m sure this is because part of the anxiety, whether there is a Chronic Illness component attached to it or not, is a fear of losing face. As in, I don’t want people to think I am nervous because then they will think I am less than.
I am NOT less than.
I am just anxious.
There, I said it.
I, Nic of the Sick (that would be my Medieval Times name), am anxious.
In fact, I am so routinely anxious that I have this on my bedroom ceiling, so I can stare up at it when I am awake in the wee small hours of the morning, thinking (not about sunshine and daisies, that’s for sure):
I worry, worry, worry, about things from the important (what am I going to do when I turn 26 and can’t be on my mom’s insurance any more?) to the mundane (I just know everyone is staring at me because they think I’m a weirdo for wearing compression stockings under my shorts in 100*F weather!).
I’m NOT crazy AND I happen to have a medical condition. (P.S. Whoever decided anxious people were crazy anyway? Not cool, society, not cool.)
My Aunt bought me this sign for Valentine’s Day because she thought it was cute, and it reminded her of me as I am <kindof> a cupcake fiend:
While I don’t usually advocate the eating of one’s feelings, I do have to say I am feeling a bit nervous about actually posting this on the Internet and outing myself as a nervy-nerverson (I also like to make up words). However, I happen to have some cupcakes available, though they are *supposed* to be for a small get-together I’m having tomorrow (which I also happen to be anxious about).
Sorry if there are not, in fact, any cupcakes for dessert at my gathering tomorrow.
I needed them.
I definitely feel calmer now.