Chronic Lyme Disease Summit 2

Too happy to have fibromyalgia

"Who diagnosed you with fibromyalgia?" the rheumatologist asked, as he reviewed my patient chart.

"My primary care physician."  I replied.

"You're too happy to have fibromyalgia."  He said.

I sat there, stunned (and, yes, smiling).  I shrugged my shoulders.  I did what I always do:  I shut down, said nothing, smiled, and then got really mad after I left his office.  I'm still mad.  It's been weeks.


How I should have reacted!

He said these things to me less than 90 days after both my significant other and my dog died, within a month of each other!  Yeah, I'm really "happy".
  


My beautiful Hobie, may he RIP 


He said these things to me when it was "all I could do" to enter that building where the rheumatologist's office is -- the same building where my beloved G had the ill-fated CT scan that led to the rapid end of his life.  

He said these things to me when I was consumed with grief over these losses.

He said these things to me when I was dealing with all the major life changes that occur after you lose a spouse or spousal-equivalent.  Things that are beyond one's control. Things like, "Am I going to make it through this day?  This hour?  This minute?"

He said these things to me when I hadn't had a good night's for over a year; the last 90 nights being the most fragmented sleep I've ever experienced -- even over and above fibromyalgia which already has a symptom of fragmented sleep!!!  (It's a sleep disorder, hello???!)

He said these things to me, when my world, as I had known it, had ended.  When my heart was broken into a zillion pieces.  


Sunset on the island of Tobago (my photo!) where I spent a lot of time with G over the years.
RIP,  miss you so much.


But.... I'm "too happy" to have fibromyalgia.

My mother always harped on me "Wear a smile."  She said it all the time.  Every time I left the house to go to school, she didn't say "I love you,"  she said, "Wear a smile!"  She always wore a smile, and I suppose her training me to do so rubbed off on me.

Also, coming from a sales and customer service background, and an AA background, I always greet people with a bubbly greeting, a smile, and a firm handshake.  Sorry, that's just me.  I guess I'm "too happy". 

Granted, I messed up by shutting down as I do.  I should have told him about the loss of G, and my dog.  I didn't tell him.  I should have told him about the crushing fatigue that's been going on for years. I didn't.  I should have told him that I agree with Dr. Daniel Clauw, that tender points were NEVER supposed to be used as a diagnostic test. I didn't.  I should have told him that I have IBS; that I "crash" after any kind of exercise or activity, that most days I have major cognitive problems, and am lucky I remember my own name, let alone what day it is, or what I did yesterday... the list goes on and on.  I didn't tell him any of that, I just sat there and said nothing.

I don't write all this to make my readers feel sorry for me. Quite the contrary.  I want to put out the message that 

you can have fibromyalgia, chronic pain, crushing fatigue, grief and loss, AND STILL BE "HAPPY"!


Wear a smile

Have medical professionals ever treated you dismissively? Tell me about it in the comments.

Comments

  1. Oh my I am so sorry about your losses. Yes I am doctored out. What is wrong with me? I can't tolerate my primary care doctor any more and yet I can't seem to change him.I have with drawn and feel like I am in my own little world. There is no one who understands. My husband is wonderful but how much I can I keep saying the same thing over and over, I understand you I do.

    ReplyDelete
    Replies
    1. thank you for replying!! And thanks for your condolences. I have switched primary doctors so many times, I have lost count. You're right, unless you live with this thing, no one understands. Hugs to you, thanks for writing a comment, it means a lot to me. Sometimes I wonder "Is anyone reading this stuff?!" :) hugs

      Delete
  2. Living in Spain, where there are still physicians who believe that fibromyalgia just doesn't exist or that it is a psychosomatic illness, I've been dealing with such a doctors, both reumathologyst and primary care doctor, for a long time. "Haven't you been told that fibromyalgia doesn't exist?" (it does existt), "You should see a psychiatrist" (no, I shouldn't), "It is all stress" (no, it is NOT). You should learn some meditation" (it doesn't work). "A bit of exercise will make your pain disappear" (no, it won't). "But, you don't look ill" (but I AM)...

    So, finally, I wear my smile, same as you, and try a new doctor, feeling as angry as you.
    So sorry about your losses! I cannot imagine how can you make it through this bitter time!. Best wishes!



    ReplyDelete
    Replies
    1. Thank you so much for your thoughtful remarks. I had no idea it was that bad in Europe (Spain) still.... I thought you guys were miles ahead of us here in the States. It is the same situation here, unfortunately. What a bummer! Maybe some day they will all get on board and realize it's real.

      Delete

Post a Comment