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Posted 9/27/2010 5:53 AM (GMT 0)
I told my aunt in private that I have Fibromyalgia. I told her that this was very private to me and that I did not want her to tell others in my famliy or even bring it up with others around, she agreed. What does she do? She in her loudest voice possible at a family dinner tonight says to my uncle, "She has a headache because of her so called Fibromyalgia." I heard her across the room with the TV on. When I caught her alone later I tried to talk to her about this and all she said was "if you really have Fibromyalgia, why is it such a big secret?" I simply told her I asked you to keep this private, and you shouted it out across the room. She then denied that she said it so loud. I simple said keep it quiet and private, just do it, then I left. Ugggg... rolleyes And I all thru this, I still was fighting a massive migrane....
Posted 9/27/2010 12:15 PM (GMT 0)

Don't you hate it when that happens?  Fibro is still an 'eyeroller' in so many respects.  I had a friend tell me that she thinks the disease is a 'mutant strain of Lyme' and to go on massive doses of antibiotics.  I have had this disorder for 20 years and still find it difficult to tell people because of the reaction you got.  No cause, no cure....therefore it isn't real.  I'm sorry your aunt could not restrain herself and felt it necessary to announce something you told her in confidence to an entire room. smhair

Huggies

Donna

Posted 9/27/2010 12:48 PM (GMT 0)
Ugghh. I'm sorry that happened to you. I, too, keep my fibro to myself most of the time; there is just too much ignorance and judgement out there. It really is one of the harder parts of dealing with fibro. It's difficult to have a disease/medical condition that people make fun of. mad

I hope your migraine gets better soon.

Hugs - Austen
Posted 9/27/2010 12:49 PM (GMT 0)
Except for my husband and two children, people think I have RA.  I won't put myself or my family through the ridicule of saying that I have Fibro.  I know it's wrong, but I want to remain credible.
Posted 9/27/2010 12:52 PM (GMT 0)
That's exactly why I hesitate to tell anyone except for my best of friends that I know I can trust. And of course my mom and mom-n-law (cuz she ha fibro too).  Have you ever seen someone say the word "Fibromyalgia" and make little quotation marks with their fingers?? I could THROTTLE THEM!! So sorry you had to deal with that. From now on, if someone of a "lesser caliber" asks me whats wrong, I tell them I have a disorder that causes my nerve endings to be hyperactive and I feel pain when I shouldn't. That's always worked.  And when I say "lesser caliber" I mean a numnut that either doesn't believe in "fibromyagia" or doesn't have the sense to keep it in private (and that's usually because they don't believe in it - anyone that does keeps their mouth shut cuz they really feel your suffering).
Posted 9/27/2010 3:03 PM (GMT 0)
My sister swears that my 'health issues' are due to living in 'this house' and in 'Alabama'. If only that would cure it, I would be away in a flash.

The last time someone rolled their eyes at me and said, 'well you don't look sick' I lost it and told them off as nicely as I could since I was standing in church and it was the asst. pastor's wife that said it.
Posted 9/27/2010 3:44 PM (GMT 0)
There are some things in Fibro 101 that might help relatives and close friends understand a little better....The Spoon Theory and Doctors Respond to New York Times Article.  Plus there are other links to articles that could help.

 

I'm sorry this happened to you.  But, you learned a good lesson....not to tell your aunt anything but the weather forecast!  That's really a shame but it is very hard finding people you can trust and people who know how to keep their mouths shut! 

 

My youngest daughter, when she was a toddler, had to be the first to let people know what was going on.  She'd come tearing in the house to spout out the latest gossip so we called her "Da, da, da...News Flash!"  tongue    We did explain how important it is to keep other's trusts and she did learn the lesson, thank goodness.  You aunt obviously didn't

 

Try not to let this kind of stuff get to you.  You know what is going on with your body and hopefully your doctor does too.  WE are here and totally understand, too.  So, consider the source...it's called ignorance.  They really need to learn things about life. 

 

Sherrine

Posted 9/27/2010 4:54 PM (GMT 0)
Hi Storm, I am so sorry about your aunt, Im assuming that you are close to your aunt being you took her into your confidence. That feeling of being betrayed is going to take a long time for you to heal. I will be praying that you find the strength to forgive her, for your own sake.
Gentle Hugs
Shirley
Posted 9/28/2010 1:13 AM (GMT 0)
Grrr...she's supossed to call me later...I need to restrain myself to talk to her, I will tryto make her understand she's a loudmouth in the nicest of ways and to let her know I'm still quite unhappy with her behavior. It's like talking to a 3 year old. Ugg.
Posted 9/28/2010 1:51 PM (GMT 0)
I'm going to throw in a differing view here. If the subject comes up, I announce it to anyone. The eye-rolling won't stop until people know this is a very real disorder. I feel I'm helping someone in the future every time I explain the disease. And yes, one of my doctors calls it a terrible disease. I exercize the least of anyone in my wellness class. When we have to talk about our week, folks get to hear about why my exersize is where it's at.....they watch me try to get out of the chair and limp my way across the room at the end of the session after sitting for an hour in that blame chair. I want people to know why I do have trouble. Fibro is real and it hurts - a lot! I don't really care if people believe me or not - I'm still going to get the word out. Someday someone will hear and understand.

But......I think your aunt was way out of line to announce this herself. It should be your decision, and yours alone.
Posted 9/28/2010 2:06 PM (GMT 0)
It doesn't really matter what your pain is called when there are no outward signs of it, I have fibro and AS and still get talked about behind my back. I just stay to myself, I don't need other people judging me, I have enough stress. Sorry she did this to you. Some people never learn that lesson...
Posted 9/28/2010 11:25 PM (GMT 0)
I tend to be like Myjoy, but there are times I'm just not up to all the scrutiny, the questions, the doubting looks. Esp. when I'm feeling really lousy. Silent, your aunt had no right to blab the way she did! You trusted her with YOUR personal information...my guess is you won't again!

Debbie
Posted 9/30/2010 7:44 AM (GMT 0)
I tell ppl that I have fibro all the time. I tell them all about the spoon theory and even keep some copies with me. I know some will doubt that I really have it but most are open to what I have to say. Heck even the gals at the bank, pharmacy and grocery know who I am and will even tell me when Im having trouble walking due to pain from my fibro.. are you O.K. ? looks like the fibro is kicking your azz today! its nice to see so many ppl that can see that Yes, fibro is hard a me at times but I also have my good days and then I am a happy chatterbox!!!
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