Saturday, May 1, 2010

How to Answer "What's Wrong With You?"

We've all heard the question in one form or another.

It usually comes at a time when you look better than usual, or feel worse than usual. But either way, it makes you feel the same as usual.

"What exactly is wrong with you?" they ask, innocently...not knowing that their "casual" remark has ignited every synapse in your brain and tensed every muscle in your body into an emergency-level  "fight/flight" response.

How should I answer that? Because the disease we battle has not received the "press" or publicity of other better known infirmities, and is not as intuitively obvious as having one leg missing, the answer we give is not all that easy to come up with, and often provokes some strange responses.

The most notable example of this happened to me on a flight from Miami, USA, after arriving from South America. Through mileage I was blessed to be upgraded to Business Class,  but even before I could enjoy the comforts of warm roasted nuts and the hot towel, I was uncomfortable.  A large man in a Panama hat seated directly behind me began coughing and wheezing so violently I actually felt spray from his mouth hit my arm. I turned around to see if it was serious, just in time to get hit with another atomized burst of germs right in my face. He didn't even attempt to cover his cough, and seemed perfectly content baptizing all six of us in this tiny cabin with his infection.

Knowing how sensitive my immune system was to these kinds of airborne bacteria, and not wanting to get yet another cold or virus, especially one I was convinced came from Panama, I rang the attendant button. When the "flight attendant" came by, I said in a whisper, "Could you please ask the gentleman behind me to move to another seat? There are a bunch open in the back."

To my surprise, she said nothing, made a dismissing face, shook her head, and started to move on to deliver more hot towels to the other Business Class passengers. But because I was a pilot, and knew commercial aviation rules and regs, I had more to say. Unfortunately, at that moment, the short-term memory, brain-fog thing that hits us at the most inopportune times came over me, and I forgot what to call her in English. Coming up with the closest alternative, I now almost shouted down the aisle, "Waitress!"

I discovered immediately that, at least in the USA, "flight attendants" do not like to be called "waitresses." Spinning around like I had just cursed her, she said loud enough for everyone on the plane to hear, "What did you just call me, sir?"

As I started to explain that I meant no offense, that it was just a mix up in terminology, she interrupted me with the question.  The question that we are not loathe to answer, but the question that usually takes more than a few seconds to explain. And there it was. 

"What exactly is wrong with you?" she spat, halfway using it as a club to beat me senseless, but also seriously waiting for an answer,

With her hovering over me like a school-marm, I muttered something about having a complex disease, included some key facts about my immune system, mentioned the word "virus" I think, and then heard myself end with "but it's not contagious!"

Whatever I said, it evoked exactly the opposite reaction that I had hoped, and for the rest of the flight, I was actually "shrouded" by her and her staff.

Shrouding is a term that was made famous in the movie "The Paper Chase" starring Timothy Bottoms and John Houseman, referring to law school students who were so inept in the professor's mind, that the professor ignored the student for the entire semester, basically acting like the student didn't even exist. Playing a shrouded student, Timothy Bottoms actually sat in class with a bag over his head. 

I guess because of my weird answer, and the use of the term "waitress", for the next 2 hours, I was shrouded on that flight.  No "flight attendant" looked at me. I was not offered a beverage. I received no warm nuts. And Mr. Panama hat coughed and sprayed all the way from Miami to our destination.

I learned through that ordeal that I had better come up with a cohesive, cogent, informative answer to the question, so that the next time someone asks me "What is wrong with you?" I would be prepared.

Over time, I've cataloged a number of concise ways to answer the question, depending on the questioner, my mood, and the need at the moment, and offer a few for you here.

The Scientific Answer:  
I have a disease known in most parts of the world as myalgic encephalomyelitis. That's a lot of syllables but it describes this infirmity well:
Myalgic- by definition means muscle pains;
Encephalo- in latin means in the head, or brain; 
Myel - refers to the myelin and means spinal cord; 
Itis - means inflammation or imflamed.
So when you put it all together it means I have a disease that resides in my brain and spinal fluid, inflaming them, and giving me great pain. It also means that it's quite amazing that I could tell you this definition without lying down!

The Allegorical Answer:
Have you ever had a bad case of the flu? Did you ever drink one too many Margaritas? Do you like the TV Game Show "Jeopardy?" Well, imagine that you have a disease that makes you feel like you have the worst flu-bug of your life, with all the concomitant chills, fevers, and aches, with a tequila hangover on top of it, and Montezuma's revenge thrown in. Now imagine that when you try to get up to go to the bathroom, some college pranksters covered your bed in thick molasses, and you can't move your arms or legs. To make this torture even worse, while you are "stuck" there, immobile, your brain is giving you answers to questions no one has asked. Well, I have a disease that is like that for me all the time. And oh by the way, "What does Myalgic Encephalomyelitis feel like, for 500, Alex?"

The Symptomatic Answer:
I have a disease that makes me extremely tired all the time, but prevents me from getting more than 2-3 hours of sleep at night. It is a disease that makes me sweat in the winter, and have chills in the summer; one that often has my head red-hot and feverish, while my feet are stark white and ice-cold. It is an infirmity that makes my immune system and brain run on overdrive, but often renders me unable to find the right words, or remember your name. In fact, I often forget what I was saying in mid-sentence, and why I was saying it. Now what was that question that you just asked me again?

I have other formulated answers that I often use, but you get the idea. The point is to have at least one...well-rehearsed, on the tip of your tongue...because you never know from who or where the question will next come.

And if brain-fog hits, or the short-term memory problem kicks in, or you are just frankly tired of answering the question, there's always the last resort. You just put a grocery bag over your head, and act like you're not even there.


  1. Hi, Kelvin,
    I am newly diagnosed with CFS and have an appointment later this month with the specialist I believe you are seeing. I have read your whole blog and am learning a lot. It's encouraging to me that, while you have been ill for so long, you have not lost your sense of humor or your trust in the Lord. Keep on posting!


  2. Kelvin,
    Thank you so much for your insight in answers to give the curious. My dad is struggling with CFS and I too have a hard time knowing what to say when people ask 'what is wrong with him'. Your humor makes this blog such a joy to read and I look forward to every update!

  3. Hi Kelvin,
    My name is Cari. I was in a "Compassionate Care" Ampligen Trial for 6yrs. I went from being completely bedridden, to being able to live (somewhat) of a life again. I wasn't "well" by any means, but to me & my parents(who I still live with) Ampligen was a miracle! I mean, I got sick when I was 11 & was bedridden for the next 20yrs. I tried every drug there was & nothing helped... until Ampligen.

    SO much of what you have written, is exactly what I went through too. I remember going through the trial & wishing there was SOMEONE that was going through the same thing, so I could ask: Are you having this side-effect? Or -what helps you w/ this problem? So I thought I'd write in case you ever want to ask someone "who's been there"... bc in 6yrs, I experienced it all! :)

    I saw you were already told to get the saline, that was HUGE for me (despite the staff getting annoyed I wanted to try it!) I also got to the point where the Ampligen Infusions "boosted me"... if I had over-done it, or if I was coming down w a cold or flu, I would go in & ask for the super large bag of saline (those gigantic bags that take awhile to put in) & get the Ampligen & I always got over the cold or flu, SO much faster. That's a great tip to know... asking for the huge bag if you're getting sick.

    I also saw you mentioned the office is not run very well. That is exactly what happened to me, & I want to warn you, BE CAREFUL WITH THAT! We literally had to FORCE this office to make sure my paperwork was handed in, that I had the latest blood-work I was supposed to get, the latest EKG, etc. And even still, it wasn't enough. On "Wed" my Dr signed my forms that said I should stay in the trial another 6 months, on "Thurs" I got a call -the Hospital Board had SHUT DOWN THE TRIAL bc the woman in charge (at the hospital) was not handing in the paperwork. (Yes, paperwork!) We fought to get it reopened & lost. Overnight, I lost Ampligen.

    I've been off the drug for 3yrs now & it's been really, really awful. As much as I KNEW the drug helped me, I didn't realize just HOW MUCH it helped me, until I was off it.

    Do you mind if I ask, are you in a "Cost Recovery" Trial (where you pay for everything yourself, but are definitely getting Ampligen, not the possibility of Saline?) That was the only kind of trial I could do, so when mine was shut down, there were only 2 others in the US... one in North Carolina & one I think in Utah? (no where near where I live). I just wanted to make sure there isn't another one I just didn't know about!
    I really hope the drug continues to help you & you can get your life back!!!!