Thursday, February 16, 2012

Fibromyalgia/Stigma of Good and Bad Hours

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learnFMnow

learnFMnow

Sun, November 08, 2009

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I wish to explain more about my perspective of the stigma of fibromyalgia.  It seems as if the stigma exists no matter what state the FM patient happens to be in at any given time.  We are not allowed to be sick.  Yet we are also not allowed to have good days or hours without the stigma.  Of course, I have my good and bad hours no matter what.  I attempt to make the miserable hours less noticeable,  though they seem to be visible at times.

 

The good days and hours are nothing less than what is considered to be lucky.  We are lucky when the FM beast decides to subside somewhat due to our medications, the weather or whatever reason FM decides to wax and wane.  However, I know that people can see me in those hours and think to themselves "Nothing can be wrong with her, she acts just like me today"?  As I walk normal, talk normal, smile, have no grimaces, I am in some state of thankfulness.  However, the stigma shall follow.  What I tend to wonder is why is it that even cancer patients are allowed to have good days and still be believed?  Yet, the FM patient is not allowed such in that they are assumed to be very healthy.  Afterall, how could I be ill at all with a chronic disease which only rears its ugly head when it chooses?

 

I most certainly am not implying that I ever want cancer.  I am also thankful every single day that I do not have cancer.  However, my disease is very cruel and very real.  We live with this illness for the entire life span with its unpredictable swings of symptoms.  Perhaps the symptom swings are part of the reason many of us are not believed.  Can I blame someone for not believing me?  Yes and no.  Yes, because this invisible monster has taken over my life and made me unable to plan any function or outing with knowing I will be able to attend.  I cannot plan a shopping trip, cannot plan to attend my daughter's school functions, or plan on doing much of anything except staying home all I can.  The minute I plan, I do not know if I can follow through.  Then again, no, I don't blame people at times for not believing something so unpredictable especially when they see my almost "normal" hours.  I am also insulted that anyone could doubt my very character. 

 

Of course, then the bad days come along.  The days I can barely move.  The days and nights when I hurt all over and am stiff as the tin man.  As I shuffle along, especially in the mornings, I am visibly either making this up or it is real.  It is real.  I can assure you of that.  Yet, the hard to believe part is that perhaps last night before bed I acted as normal as any healthy person.  Therefore, the thoughts of some would be "She was just fine yesterday, how in the world could she be acting like she is dying now"?

 

The cancer patient gets cheers on the good days.  People think and say "Wow, she is having a good day, how wonderful that the cancer is not painful right now".  Yet, with FM, a good day is simply another way of people accusing us of not having a valid physical illness. 

11/ 8/09 1:31pm

i want to tell you how much i appreciate what you have so well written.i have been living with chronic cervical degenerative pain now for two decades and i share your sentiments completely! sometimes i am in so much pain i want to lie down on the ground and scream, but i can't because i am smiling and engaged in some social activety where people are thinking..."he's in pain?" it is the pain on the inside and smile on the outside (my two concurrent  existensies) that is more and more difficult.....especially when i am with family member's i love and try to protect from my suffering....thank you again for your wonderful sharepost

beanie, d.m.d.

Anonymous
learnFMnow
11/ 9/09 10:35am

I am so glad I could reach someone out there who needs understanding.  People tend to judge no matter what.  You can grimace and they think you are faking.  You smile and they think nothing in the world is wrong.  I just get fed up with the everyday stereotypes of what people think pain "looks like".  Pain is what we "feel" not what we can see.  People living in chronic pain often react to pain much differently than one whom has just had their toe hit with a hammer.  We learn to live with chronic pain because if not, we would not live at all.

 

Thanks,

Debra

a.k.a. learnFMnow

11/ 9/09 4:28pm

debra....i am most interested in how people in chronic pain live everyday at two different "levels"...i just went to a wedding and smiled and socialized (at night) while screaming out internally in a level 8 pain and stiffness!...sometimes i feel like just won't be able to do it....then what??

beanie

11/12/09 12:34am

Agree totaly 100%

10/16/10 7:39pm

I actually had a dentist degrade me about 3 days ago for having FMS. He told me "Well since you have fibro, I know everything in the world is wrong with you. It would normally take a person 2-3 days to recover from a tooth extraction, but in your case it may hurt for a week or two." Needless to say, I am fine within hours. I told him this was my 7th extraction. He was very rude and rough on me the whole time and seemed displeased to even help me. Not the first time I have been treated unfairly by a doctor, and I am sure it's not the last. I am confused as to why anyone would enter the healthCARE profession and not actually CARE!

I was diagnosed at age 24. I felt fine.. I really didn't understand what they meant. Now I am 30, and I am definately feeling it. Not just the physical pain, but the emotional pain of being misunderstood or stigmatized by the people who are getting PAID to CARE! Its emotionally and psychologically scarring. I do not wish that I had cancer either, but if I did, I am certain I would have the support and care that every patient deserves (regardless of condition, age, race, sex, demographics, etc.)

I do wonder if there is a hotline of some sort to report abuse (verbal) by a physician. That was the short version of what all he said. I do not think anyone should be allowed to be in the healthcare profession and be apathetic towards anyone for any reason.

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