November 13, 2004

• I’d rather not talk about it.

  I don’t like discussing my health in social situations.  I vent
  here in my journal, and I answer requests for information, and that
  doesn’t bother me.  I don’t mind talking to my family about how
  I’m feeling.  With Doug, it’s usually just a matter of bringing
  him up to speed on the disability de jour so he’ll know what’s going on
  with me and how much help I might need from him.  Greyfox asks how
  I’m doing and when I’ve told him he goes on to tell me what his body is
  up to.  It’s not a big deal.

  I understand that when most people ask, “How are you?,” they don’t
  really want to know.  It’s a social formula, a little
  how-de-do.  Even in that situation most days I’d feel dishonest
  saying, “I’m fine,” as is usually expected.  I usually say, “I’m
  okay.”  Even that is off-putting for a lot of people.  I
  can’t count the number of times in my life someone has come back with,
  “Just OKAY?!”  Sometimes, even okay is not at all accurate and I
  say I’m having a bad day.  As much as I would love to pretend that
  all is well, I don’t think that’s honest, and it can make some
  sensitive people wonder if I’m pissed off at them or something when
  they pick up on my distress.  When I’m limping, gimping,
  stumbling, fumbling and whimpering, I’d feel foolish telling people I’m
  okay.

  At the meeting Thursday one of the other members asked me how I’ve been
  feeling.  I wasn’t feeling too bad at the time, so I said, “I’m
  doing okay.”  He persisted.  He said he’d heard that I wasn’t
  feeling well.  That’s something else that makes me
  uncomfortable:  knowing that people talk about me in my absence –
  and not just about me but about my disability, this damned disease.

  This guy is one of my favorite people.  He’s not just one of my
  favorite fellow dope fiends, he’s someone I like a whole lot and
  respect for his intelligence and humor.  That he’s got a raging
  case of NPD at least as severe as Greyfox’s isn’t a problem for me but
  I’d bet it is a problem for that “significant other” he occasionally
  mentions at meetings.  Since narcissists lack empathy, I don’t
  suppose he felt me squirming inside my skin as I answered his questions.

  Fortunately after a little bit of discussion of me, as narcissists do,
  he turned the discussion onto himself.  What a relief, getting out
  of the spotlight!  But then I started getting uncomfortable,
  because he was uncomfortable on account of, even though he didn’t
  really know what he’d done, he could tell that he’d made me
  uncomfortable with his questions.  He was making some clumsy
  efforts to be ingratiating.  Since I may have more than my own
  fair share of empathy, I was really feeling for him.   
  He was probably thinking, “try to be nice, and see what it gets me.”

  I hadn’t been rude to him.  I was, I suppose, a bit short.  I
  didn’t want to talk about it.  One reason I don’t like being asked
  about my health is that I’m never sure how far to go in answering such
  questions.  I hesitate to mention even a single symptom because
  the damned symptoms come in bunches and a list of my current
  malfunctions can be off-putting indeed.  I don’t like even
  mentioning ME/CFIDS because that often gets me blank looks and a
  baffled, “Huh?”   Then there’s the tongue-twisting, “myalgic
  encephalomyelopathy….”  I’d just rather not talk about it.

  This, I know, is not an inborn aversion.  It’s something I
  learned.  Even in school when I’d be absent for an extended period
  or get sent to the nurse’s office in the middle of the day, and other
  kids would ask me what was wrong with me — and who wants to try to
  explain what’s WRONG WITH herself? — the feedback I’d get was far from
  positive.  Kids are generally cruel to anyone who is different,
  especially if they display weaknesses.

  Through many years and many different diagnoses and misdiagnoses, my
  occasional gimpiness and the times I’d simply fail to show up for work
  or for planned events, I’ve gotten a lot of negative feedback and
  unwanted attention.  I’m kinda touchy on the subject, as a
  result.  So, if you’ve been wondering how I’m feeling, don’t
  ask.  Around here, if there’s some big news to report, or any
  significant change, I’ll tell you.  When I’m truly in dire
  straits, Xanga will be the first to know, just as soon as my fingers
  are functioning well enough to work the keyboard.  This is my
  whining place.

   If you see me on the street, don’t snub me.  Say hi. 
  But for both of our sakes, don’t ask, “How are you?”  I might feel
  obliged to explain.
  

  • 12:46 pm
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