the other kind of social disease

The Meriam Webster Dictionary defines the term “social disease” as the following:

Main Entry:  social disease

Function: noun

Date: 1891

1: venereal disease.

I’d like to respectfully submit a second meaning:

2:any disease or condition that significantly impacts ones social life, friendships, relationships, and general interaction with society…

I was recently diagnosed with CFIDS or Chronic Fatigue Immune Deficiency Syndrome.  I have seen doctor after doctor after doctor.  I take medication for anxiety disorder and an inability to manufacture enough GABA (the stuff your brain makes that allows you to physically relax) and have for more than ten years.  These are realities I’ve come to deal with and are, for me, not terribly debilitating.  Sure, I don’t sleep well, but I’m I don’t have agoraphobia or claustrophobia or any other phobia that keeps me from fully enjoying my life- having several large circles of friends, enjoying the blessing of living in NYC and all that it brings, traveling the world over for business and pleasure, finding absolute nirvana being a stranger in a strange land.

I have been sick and tired over the years, suffering bouts of exhaustion and increased pain that left me cranky, sleepless and with an intense desire to hibernate.  Some attributed this to a latent depression or the aftermath of being hit by a van whilst crossing the street almost 20 years ago.  The accident did a good bit of damage to my body, the effects of which are felt more intensely and impact my life more acutely at times.  Spoken or not, most people assume the former, not having been in my life for the accident and all that followed. 

By people, I mean my friends and acquaintances.

I’m not going to lie.  I found this to be frustrating.  I have seen internists, orthopedists, physiatrists, therapists (physical and emotional), psychiatrists, neurologists, accupuncturists, every kind of “-ist” one can think of.  I’m very proactive about my health.  I don’t despair.  I have rare moments of sadness over the some of the tougher aspects of my childhood/ young adulthood.  I always pull through and I’m always OK. 

The last six months, however, have been out of control.  I was out of work for months, for what I thought was some crazy-mutant evil sinus infection.  I’ve had surgery, taken steroids, exhausted supplies of anti-biotics, changed my diet, everything.  I just couldn’t get better.  And I didn’t know what to do.  Staying home all the time because I was too tired or dizzy or fuzzy to go out didn’t leave me with much to talk about other than what was wrong with me.   Naturally, this affected my relationships with people.  I mean, how many times can a person listen to someone complain about the awful smell or electric mucus or fatigue or headaches, or whatever.  It’s a drag. 

You see, just because you’re anxious or tired doesn’t mean you’re depressed.  And even if one IS depressed, it doesn’t mean you’re not physically ill.  My affect has always been positive, regardless of my circumstances, and I’ve yet to meet any one of the “ists” that felt differently.

On the emotional side, the several therapists I’ve seen have all remarked that I am in remarkably good shape considering my history and physical state.  On the physical side, the “ists” have assured that I’m not a hypochondriac and my physical symptoms are real, though no one had ever given a diagnosis or options for alleviating my issues.

The one thing they pretty much all agreed on is that I’m in remarkably good shape all things considered.

So, when my new doc, whom I will love until my dying day, gave me the news, I thought “OK, good.  Now I know what’s going on.  Design plan of attack.”

The plan of attack went as follows:

  • recall the episode of the Golden Girls where Dorothy gets Epstein-Barr but no one knows and the doctor is a jerk to her and tells her she’s old and bored and needs a hobby and then she sees him after her diagnosis and ‘gives him a piece of her mind’ in that same tacky Miami restaurant where all dinner scenes are shot while wearing some god-awful shiny-in-some-way tunic (Dorothy, not me); 
  • remember to dvr above mentioned program in hopes of finding said episode or the one where George Clooney is a cop using Blanche’s house for a stake out;
  • scour the web for information on this stupidly named, nebulous disease;
  • read all the information contained in said websites, focusing on the more reputable sources, notably the Mayo Clinic’s excellent page;
  • send email to closest friends with the news and a link to the Mayo Clinic (so one doesn’t have to explain the same thing over and again);
  • find a local support group;
  • get a hobby (highly advised by experts)- I chose knitting and genealogy, both things that can be done from sitting or lying positions, and not interrupt intense Law & Order viewing schedule;
  • get a new air conditioner for my room since I’ll be spending a lot more time in there;
  • try and relax.

You see the rules of CFIDS are pretty simple, like Fight Club:

  1. rest.
  2. rest.
  3. don’t get stressed out.
  4. rest.
  5. figure out what works for you because no one knows what causes it or how to cure it so you have to make up your own fighting style…

pretty simple.  also: pretty boring.

You see, everyone has an energy budget- different for everyone, and variable depending on how acutely one’s being affected at any given time.  My particular ration seems to be 8 or so hours of recreation = 3 days in bed and/or some sort of infection.

Needless to say, this has a wee bit of an impact on ones social life.  I didn’t respect the limits of my personal budget, or more specifically, wasn’t aware of them when I went to my best friend’s wedding.  Three days in Newport = a week in bed and a trip to the ER.

Fourth of July party at a friend’s house = cabs to and fro (wasting energy on the subway is not worth it these days), a nap during the party, followed by five days of rest.  Owing to the fact that I walked to the Apple store for new headphones post-doctor’s appointment on Monday, two days later, my stay in bed was extended.

What I’m getting at is this: this condition or syndrome or disease or whatever is a serious pain in the ass.  Captain Obvious, I know.  The thing I personally feel is the hardest is the isolation.  I can’t really just pop over to the beer garden to watch the Euro Cup finals with everyone else.  Or head out to see a free Hancock screening on a Wednesday night with my buddies.  Or head to down to a friend’s house for the weekend by the pool, even. 

For someone who gone to Santiago or Dublin for the weekend on a couple of days notice for no reason whatever, this is pretty rough.  I want to get the french out of Dodge, but it’s not an option.  I’m still having a problem computing this.  I’m booked on a flight from JFK to Cairo Sep 30, 2008.  My doctor is as determined as I am that I make that flight.  Keep your fingers crossed for me, kids, I need it.

(Sorry this post sort of ended abruptly.  I lost steam.  Part and parcel of the whole deal.  More later on my particular doc’s plans for me with CFIDS for those who are interested.  She’s the shit.)


2 Responses to “the other kind of social disease”

  1. 1 Cynthia Burmester 30 July, 2008 at 01:44

    Thank you for defining the social impact of CFIDS/CFS as best I’ve ever read. For the last three plus years my world has shrunk. No one save my spouse, child, and sister truly understand.

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“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”


Upon common theatres, indeed, the applause of the audience is of more importance to the actors than their own approbation. But upon the stage of life, while conscience claps, let the world hiss! On the contrary if conscience disapproves, the loudest applauses of the world are of little value - john adams
July 2008
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