Tuesday, May 12, 2009

A Nurse speaks on Fibromyalgia

At the Walk/Vigil, I received a copy of the FMAware magazine (you can order a back issue, this was Winter 2008, from www.FMAware.org) which had two articles by a nurse.
The first was titled "How can I have a disease I don't even believe in?", in which she recounts her own lack of empathy, thinking fibro patients are simply drug seekers.  When she received her own diagnosis, a colleague warned her "don't tell anyone.  They won't believe you."  "I am now on the receiving end of a lack of empathy ... I am getting a taste of my own medicine, and it is leaving a very bad taste in my mouth."
She joined a support group and recounted the question she asked when she was diagnosed.  The group leader said "I bet you believe in it now!"  "The group laughs with understanding and compassion.  I am accepted -- and humbled -- by the experience."
"I ... had to come face-to-face with the harsh judgments and stereotyping by my peers, fellow registered nurses.  I am now a patient on the other side of the fence."
In the second article, she quotes a nurse "People who think they have fibromyalgia, I lump into the same group of people who believe they have been abducted by aliens."  Other nurses, who had friends and family members with fibromyalgia, admitted they only acknowledged it was real when they saw "a go-getter" get sick.
"I believe registered nurses have a duty to stay well-informed and to be able to pass on unbiased and objective information.  We have a duty to be non-judgmental and open-minded, and to act from a place of informed empathy.  My interviews indicate that many nurses fall below this ideal..."
As do many doctors.  They are completely unaware of any of the scads of medical evidence proving that CFS and fibromyalgia have biological underpinnings, and disparage what the patients tell them.  Some even verbally abuse the patients when they are unable to return to work.
Step One is well underway -- we have the research to prove we're not lazy, crazy or faking.  Now it's time for Step Two, making sure that research is disseminated out of the labs and into the doctors' offices.  It will take a massive re-education campaign, and some doctors will never change their minds unless and until they see someone close to them, someone they know for a fact is not simply "too lazy to work".  There are plenty of stories about doctors who were unbelievers until they, themselves, were struck down by the illnesses they'd disparaged as hokum.
Because the doctors I saw did not meet me until after I got sick, it was easy for them to convince themselves that I had to be lying about all the things I said I'd accomplished and my desire to go back to work.  They wanted to see a woman too lazy to exercise and looking for any excuse to quit her job, and discarded any evidence to the contrary.  But if you talk to the doctors I went to school with, they will unilaterally tell you that I was very active and an overachiever, and definitely was not the sort of person who wanted to lie on the couch watching TV the rest of my life. 
Unfortunately, the doctors who know me that well are in the wrong state, and the wrong specialties, to do me any good, other than to serve as emotional support when their colleagues call me a liar simply because I don't say what they want to hear, and refuse to change my story when they accuse me of lying for saying that I would love to be able to exercise again and that I would much rather be at work than at home.
I was not abducted by aliens.  My body was abducted by a virus.  Had my friend taken me to the ER that weekend, there would have been no arguing about the validity of my illness -- I had objective symptoms including vomiting, diarrhea and a 105 fever.  But it looked like the flu, he knew the home remedies for the flu, so he saw no point in running up a huge ER bill just to be told what he already knew to do.  Unfortunately, as rational as it sounds to say that I had a virus, there are still doctors who'd be more convinced by an alien abduction theory, because there is now no proof other than my word and his, that I had that virus 22 years ago.



Xo Gina Xo said...

HA! Now she knows how we feel and what almost all of us, i'm sure, have dealt with from the majority of doctors at one time or another! I was very fortunate to have my endocrinologist dx me over 15 years ago when, at that time, was even the first time I had ever heard the word "fibro." I'm just glad she believed in it and recognized what it was immediately (after one office visit and some tender point tests).
I often have said, and still do say, that people don't know jack s**t until it happens to them... then it's the end of the world!!

CFS Facts said...

That's the best revenge for patients, when someone who'd previously pooh-poohed CFS or fibro comes down with it and can no longer deny its existence.

And if it's someone in the medical profession who can educate their colleagues, who know that their friend is no slacker... so much the better!

The story coming out of the local 1975 CFS epidemic at Mercy San Juan Hospital, is that the CDC investigator wanted to write it all off to laziness, but Dr. Ryll, who was charged by MSJ with investigating before CDC came out, knew his colleagues weren't lazy, and kept looking for reasons after CDC went home.

We need more stories like that, more doctors who get slapped in the face that "John isn't lazy" after telling 1000 female patients to just get off the couch and stop whining.