Saturday, May 26, 2012

Five misconceptions of the public concerning my condition


Periodic Paralysis is widely misunderstood, especially by those who have never heard of it. I thought I would share a few examples that I run into fairly often. In no particular order:


1. Oh, you have a potassium problem? Just add more potassium to your diet and you'll feel better, right?

My response:

This is not the same disorder as low potassium (Hypokalemia) and it should not be viewed as such. If I could "fix" myself by eating and drinking potassium, don't you think I would do it?

Furthermore, the metabolic disorder Hypokalemia is often secondary to other diseases, so there is rarely an "easy" solution out there. The physiology behind electrolyte transport is somewhat complex, so it's not always as simple as popping a pill or eating a banana.



2. Nice person: I'm sorry your pain is keeping you from doing things.
Not-so-nice person: A lot of people live in pain. Suck it up and work through it.

My response:

Thanks, but my "pain" has nothing to do with my disability. I have lived with constant chronic pain since age 12, but I have lived to the best of my ability in spite of it. Pain is not the disease. It is only one of many symptoms of the disease. I have always worked through the pain whenever possible, but there is a big difference between hurting and being physically incapable of using your muscles. Pain doesn't keep me from moving, defective channels do. There isn't a person on this planet who can "suck it up and work through" muscle failure.



3. Oh yeah, I know all about that. My friend/cousin/uncle/sister/roommate has MS.

My response:

I understand their desire to relate to my life so that I don't feel alone (I do it to others myself, big time), so I don't usually correct someone unless they push the issue. However, this is not Multiple Sclerosis. MS is a progressive nervous system disorder that can result in the loss of motor skills due to nerve dysfunction. Periodic Paralysis is considered a rare form of MD, which is Muscular Dystrophy. Strictly a muscle channel defect, Periodic Paralysis is not caused by the brain, nor does brain damage result. While muscle activity is greatly affected in both conditions, it is for two different reasons from two different sources.



4. [Paraphrased] Since you claim to have neuromuscular disease, you can't possibly be right in the head so you probably don't really know what you're talking about. Here, let me say condescending things to you because you don't know any better.

Many with Periodic Paralysis have been treated this way, including myself.

My response:

"Myopathies have no effect on intelligence." - Muscular Dystrophy Association

I was tested by a Psychologist and found to have an I.Q. of 139 when I was 8 years old. I took the test again at age 21, after my diagnosis, and my score was higher. I left college on the President's List and I'm an alum of Phi Theta Kappa.

My brother is smarter than I am, for the record. In fact, my family is nerd central. It's not relevant in the long run, but worth noting to get the point across that just because someone has a severe physical disability, it does not mean they have a mental disability. I have to admit I'm a bit surprised to meet people who don't realize this.

What I'm terrible at? Motor skills and social skills, both of which leave a lot to be desired. I was late tying my shoes, needed daily assistance in styling my poofy 80's hair, and could not ride a bike to save my life. Still can't. Never will. I'm also a terrible public speaker who doesn't manage being "put on the spot" well. I'm an introvert for the most part who has to put more effort than average into achieving successful face-to-face interaction. Sometimes, I fail miserably.

At any rate, it's comforting to know that if you have Periodic Paralysis, your brain is present and accounted for, albeit, foggy at times due to potassium shifting. Think of it like you would if you had Diabetes. If you've ever experienced a sugar crash, you know that it results in confusion, lightheadedness, sometimes anxiety or aggression...your head feels foggy because glucose, which fuels the brain, is shifting from one place to another in an attempt to balance things out. The effects of HypoKPP on the brain are no different, to my understanding.



5. It's Hypochondria/Psychosomatic Disorder/Conversion Disorder (Otherwise known as: "Your blood tests came back normal? Then there's no reason for you to be acting like this. It's all in your head.")

Warning, snarky response ahead:

With Periodic Paralysis, episodes frequently occur within normal serum potassium levels because even a small shift in potassium through unruly muscle channels can result in incorrect polarization. Episodes certainly occur outside of normal range, but also very well within and that fact is of utmost importance to note. To label someone as a head case because you fail to understand the facts is deplorable. Please stop talking, pick up your big 'ol ego, and shove it. And have a nice day.

If by chance you are a physician diagnosing people as "mental" for the sole reason that you cannot figure out their ailment, I humbly ask that you seek further education as well as be honest with your patient in saying "I don't know" instead. There is no shame in that, and I can tell you first hand that saying "I don't know" is leaps and bounds more respectable than calling someone delusional. I believe that we have only touched the surface of understanding abnormal processes of the body, so it is rather impossible for you to know everything there is to know about a person you've barely met. If you insist on believing that you are all-knowing in spite of this, please be kind and pass the torch to someone who is better qualified to represent the Hippocratic Oath. Thank you.


At your convenience:



In conclusion, please understand that I greatly appreciate all who wish to discuss my condition with the right intentions and an open mind. Do not ever hesitate to come to me with questions. I promise I don't bite. :-)

I am also eternally grateful for the physicians who have listened, cared, and done their job well over the years. Keep up the good work, and God bless.

2 comments:

  1. I'm so glad I read this today. Everything you said is spot on. One term I really hate is that....conversion disorder term!! It's so insulting.

    Also...I don't know why other family member don't want to look into this for themselves. Maybe they're in denial? Maybe they never believed this is really an illness?

    My doctor finally is believing in PP but he keeps taking my potassium and it normal so he saids... you're ok.

    With all my griping...I'm still glad that after 22 years of being in the dark about my condition...I now know what I'm dealing with.

    Thank you so much for this post.

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  2. Thank you for your comment and I hope my posts are helpful to you.

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