Tuesday, May 24, 2011

The Stigma Of Fibromyalgia

A thought just suddenly popped in my head, seemingly from nowhere, and I am finally able to put my finger on exactly what the stigma of Fibromyalgia brings to the table. See its not that we don't want to get better or are lazy or are working the disability system or are crazy, drug seeking or just feeling the normal aches and pains of age. That is what the ignorant must believe for some odd reason of their own. But I am talking about the rest of the folks we know and come into contact with. The ones we expect support and belief from. Their reactions can lie from fascinatingly interested (my favorite of course) to apathetic, sympathetic or just plain uncomfortable. And often times we are treated poorly, our proclamation of ill health met with skepticism, and the truth that lies underneath that attitude. The belief that if you would stop indulging this problem of yours and just assume yourself better, you could have your life back. And that is all it is my friends. Dismissed as optional. Once I was able to assess this fundamental truth I felt the scales fall away from my eyes. It was extremely easy for me to picture why we are not taken seriously.

I remember, long before I got sick, hearing about something called Chronic Fatigue Syndrome. Maybe it was towards the end of college, in my early 20's. And I distinctly recall thinking to myself Well then why don't they just get enough sleep? Go take a nap! Many moons later I got a very serious and debilitating group of infections with the same name, but in no way did the name fit the disease I was afflicted with. The debilitating, painful, life-sucking sickness that disabled me. And I understood. But you can't really understand until you have it. Unless you have it. In the mean time we are made to feel frivolous and indulgent about being sick! How about the disappointment and inconvenience factor? We are reminded, often in painful ways, how unacceptable our behavior (illness) is, or how harshly judged we are, and not even behind our backs! I struggled with this for years. Especially with family. Most of my friends had fallen by the wayside once I took ill. But family gathering, oh those were some doozies! As salt of the earth traditionalists, the men watched football and women cooked and cleaned. Frequently it was inquired as to why I was only bringing one dish. Whispers wisped around, tongues clacking that I was not helping enough with food prep or clean-up. And inquiries straight to my, and my husbands face, as to why on earth we don't have children yet and need to hurry up already! We ain't gettin' no younger! Oh that was an ugly one. The lack of empathy was never so strong as it was on that topic.

And all this judgment and criticism and refusal to accept that I was sick with something real only served to make me not want to be around them! It took a lot of strength, forgiveness and self-love to get to the point where a complete lack of interest in my medical condition rolled off my back. And some days I am up to it, strong enough to deal, and others I am not. But I still am cut to the quick when I am challenged over my diagnoses. When it is implied, or blatantly stated, that I am just dramatically nurturing depression or are lazy or worst of all, don't have good manners! Everyone suddenly turns in to a diagnostic technician, doctor, herbalist or pharmacist. Especially the ones that had a friend who had Fibromyalgia and just did_______ and is all better now! So guys and dolls, we have a lot of work to do. A handful of doctors have picked up this diagnoses and seek to find a cause and cure. A bunch of organizations have formed to spread awareness and raise funds for research. And those are SO important to advancing our cause. But the biggest social impact to raise awareness and validity of this illness lies with the 6 million and counting in the USA alone that have Fibromyalgia. We are the voice of this illness! We are the normal people walking around amongst our peers that must stop and inform everyone our lives touch that Fibromyalgia is real, we have it, and we are not going away because it is an inconvenient or disbelieved illness. I get a lot of inquiries as to what that purple band on my left wrist is for, and cherish each opportunity to explain, educate, and ultimate make the reality of living with Fibromyalgia a much more decent place to dwell.

Thanks for joining,


  1. Very well said. Sometimes, when people don't get it; I'll ask....have you ever had to take medicine that made you unable to stay awake? Well imagine that feeling combined with how it feels to stay awake all night and day without sleep...followed by an unfortunate fall down a couple flight of steps. Got that feeling? Well that's a good day for us.

  2. I look forward to reading your blog every day Leah darling, thank you so much for being so open honest & true. much love & butterfly hugs sent your way (((~<3

  3. 99 percent of what you just wrote is my life. I wish others could understand how we feel. My husband acts as if I choose to be this way. Very well written, thank you.

  4. "strength, forgiveness and self-love" Yes that is a great mixture that all fibro sufferers need in their arsenal. A pity but true.

  5. Oh, how I wish "assuming" myself better would work, how lifestyle/exercise/nutrition/changes would make it all better!
    I miss being a reliable person. It is hard to desire to work a "9 to 5" job knowing that your mind kicks into gear about the time the body craps out.
    It is a good thing I learned long ago to accept the fact that what you want and what you get are rarely the same thing. Don't LIKE it, but I accept it. :-\

  6. i too hate the way i am ,the way i feel I hate the fact i get up every day to the same feeling .I wait for it to change but in my heart i know it will not yes some days are worse than others on my good days i do more then pay the price It is my birthday today went out with my two daughters and their children .Tonight i have pain all over its like this all the time MY biggest wish is that there will be a cure .But i must take this opportunity to mention My big sis she has bone cancer and is having a tough time of it ans i must say i think myself lucky to only have FM and not cancer .I will not die of FM my poor sis bless COULD So yes i accept FM gracefully regards an fm sufferer xx

  7. When I read this post I thought I had written it! I have an Aunt that when I told her I had Fibro, she said she once had it but it was gone now! Every time I share with her what the doctor has said, she tells me she has had it and she no longer has it. According to her it's all in the head or she can cure it with one of her herbal meds!
    It's so hard to be around family members that are not supportive at all and yet love us...in their own unique way.

    Thanks for sharing :)