Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

What She Said

Written by Katie. Posted in POTS Awareness

I got permission to post this from my friend, Steph, who is a medical student at the University of Toledo.  She also has POTS, and most likely EDS.

Steph had reposted the article, “It’s Dysautonomia, Not Laziness” on her Facebook page after reading it on this site.  Well, some dude probably not thinking, and trying to be funny commented by saying something to the effect that it’s just lazy people, with excuses.

Well, that was not the best choice on his part, as you can imagine.

Following his comment came this brilliant response from Steph:

Thank you for beautifully illustrating my point, ___.  That’s quite a bold comment to post, given that I have never met you in person and all you know about me is that we attend the same medical school.  I’m going to give you the benefit of the doubt and assume that was either a joke or a poorly executed attempt at sarcasm. 

 
 While I can let uneducated comments go and they don’t bother me much now after realizing the ignorance behind them, if I were the only person dealing with this condition, I could laugh it off.  I’m typically pretty laid back and rarely take things personally – most of UTCOM 2014 can vouch for this.  
 

However, I’m not the only patient interpreting your input, so that changes how I view such insensitivity.  In response to this comment, I feel that I have an obligation to make sure that the point is incredibly clear that I am very serious about making people aware of POTS (postural orthostatic tachycardia syndrome) and dysautonomia, which is grossly under-diagnosed and impacts an estimated one million people – a good number of them young adolescents and twenty-somethings.

 You see, while this may have been intended as a benign comment, I am betting that a handful of the people I know with POTS or another form of dysautonomia are reading this article and will almost certainly see your remark.   I can promise you that heading into a bad day from the condition myself, and having just talked with a friend who is having a miserable week thanks to dysautonomia, they will not find it funny in the least.  In fact, it will hurt them, because for some of these friends, it took years to diagnose the condition.  People told them that “it was all in their head” or that there was nothing wrong. Personally, I would like those same people to inform my 190bpm standing heart rate, or the shooting chest pain that kept me awake for the majority of last night, of this news.  

These friends of mine, so incredibly strong and optimistic and truly inspiring, have lost so much due to their health challenges.  They’ve lost jobs, school opportunities, relationships, and most prominently, their independence and autonomy.  Many patients can’t drive due to blackouts or syncopal episodes.   Some can’t even stand and are bedridden, relying on others to help them through the day.  Forget being able to enjoy a hot summer day, much less trying to exercise, an important treatment for POTS.   Add on constant tachycardia, shortness of breath, terrible chest pain, incessant dizziness and disorientation, memory loss, insomnia or hypersomnolence, digestive problems, nausea, and a debilitating fatigue, and you have maybe a small taste of what it means to live with chronic dysautonomia.
 

While the symptoms are difficult, the worst part about the condition for many people who suffer from dysautonomia is the social perception and reaction of the patient or the illness.  People are ignorant and insensitive, and say ridiculous things that only harm the patients who are suffering from very real symptoms.  We don’t “look” sick.  Quite frankly, even on my worse days, no one really picks up on how badly I feel, other than maybe being a bit more pale or tired-looking.  If we were in a body cast, a comparable scenario during the times I have to be laying down in order to avoid fainting, not one person would even consider me as just being “lazy.”  That is the accusation that really sets me back sometimes, because while I realize the objective medical significance of rest in order to fully recover, it is difficult to know that ignorant people assume that I would willingly want to NOT be moving at the 110mph speed of life at which I thrived and loved and took for granted for the first 2 decades of my life.  Internally, our bodies are literally under conditions that are objectively measured to be that of a marathon runner, though while sitting or standing in place.  Trust me, although I eventually wanted to run a marathon, I didn’t want to do it every single day while trying to succeed in medical school.

Imagine the damage done by such comments to someone who is bedridden by dysautonomia.  While I am fortunate that this is not my case on most days, I know that to be told they are “lazy” when they are in fact doing everything they can and are actually physically unable to get out of bed, has to make them feel helpless, which can easily and dangerously take the turn towards feeling hopeless.  It is our sacred responsibility as future physicians to trust our patients, to gain their trust, and to provide them with hope as we do everything in our power to help them to heal in the best way possible.  

The reason why I posted this article was because it highlighted specifically the reasons why many physicians don’t integrate the symptoms to treat the comprehensive clinical picture.  I had hoped that since the majority of my Facebook friends are future physicians or health-care professionals, they would read the article and at least recognize the paradigm limitations that our medical education often overlooks in dysautonomia, and perhaps one day make that diagnosis and change someone’s life for the better.   This rebuttal isn’t only for my POTS friends.  This is for the sake of advocating for my future patients, and I hope that you start to take the esteemed privilege we have to provide them with only the best of care a bit more seriously.  

I am seriously more than happy to talk with anyone who would like to learn more about this condition, or direct you to a world-renowned dysautonomia expert.
 www.dinet.org – Dysautonomia Network
www.ndrf.org – National Dysautonomia Research Foundation
From “Mystery Diagnosis”:  The Woman Who Kept Falling Down
Part 1: http://www.youtube.com/watch?v=NN3PB6N6oGY
Part 2: http://www.youtube.com/watch?v=I40-r3RpFjs&feature=related

 

So, there you have it.  I could not have said it better myself.  Thank you Steph, for a beautifully written, on point, and honest response.  Things like this are needed for education and awareness.  You will be the kind of doctor, patients will be begging to get into.  Possibly, the next Dr. Grubb?

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Comments (1)

  • Steph

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    Katie,
    You are much too kind… I’m sure you would have responded with something similar, I was just voicing what I thought all of my fellow POTS warriors needed to make clear to the world. Plus, when dorks like that say ridiculous things, especially when they may one day see patients (maybe he’ll go into pathology?), they need to be made aware and better educated. Thanks for your support on the matter, means so much 🙂 We’ll make good things happen from this challenge, both of us; I have no doubt.
    PS… I am reading Dr. Grubb’s most recent book right now, “The Calling.” Have you read it? If not, I highly recommend it… that man is truly incredible, both as a physician and a person, and a beautiful writer.
    PPS… How are you feeling? Better, I hope! Hang in there and take care, girl! 🙂

    Reply

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