Skip to content
Are You Heard?
avatar
Caprice_WebMD_Staff posted:
Many of you have shared how at least at one time or another you had/have trouble being really heard by your family, friends, even (especially?) your doctors when you need them to know you're tired and hurting and that Fibromyalgia is a real condition.

Is there someone in your life who didn't used to 'get it' but who gets it now? What changed? Who in your life never seems to understand or give you the support you need and what steps have you taken to ensure you ARE heard by those you need to hear you?
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
Reply
 
avatar
lesfm1 responded:
Hello:
No, actually I don't think I am ever heard, by anyone! I gave up trying to explain it to everyone. I believe my doctor thinks i'm just depressed. I mean when I first started going to him for this pain he said it was fibro and I have been on cymbalta and other stuff for a while, but he seems more concerned about depression. I don't know. All I know is I am soooo tired of feeling this way and others not understanding when I say I don't feel like it or I'm too tired. That with all my other problems, well sometimes I just want to scream ! but I guess we all fell that way sometime. No wonder I never have any money, ALL THIS DARN MEDICINE! Surprised I don't rattle when I walk.

Thats my story and I'm sticking to it....

lesfm1
 
avatar
WomanInBath responded:
No, no one hears or understands except us!

I swear, if one more woman says to me "Oh, Fibromyalgia,,,,,Yeah, I used to have that for about a month."
I'm gonna punch her right in the nose!!!!!!!!!!!!!!!!!!! (not really,
it would hurt too bad.)
I know it's just because their Doctor used this term as a "Get out of my office, you depressed, lazy woman."
This site is the best for discussing anything related. Each of us has something really important to say and should say it. You never know who it may help.
Fondly my Fibro Friend, Meg
 
avatar
WomanInBath replied to WomanInBath's response:
My own Brother asked my Mom "Why doesn't she just get a job?"
I was crushed.

Seems eveytime I get the courage to tell people what I have, it somehow, gets no where.

One tip that I did was to send this forum to my immediate family, just so they could read as little or as much as they felt like because everyone here has the same complaints and feelings, etc. ----I'ts NOT just me.
It made my Mom cry so I know she really read enough to know....Something. She forgets because I look normal.
Keep On Truckin'
 
avatar
BelPwnt responded:
It's taken work, but my husband and my mom 'get it'. My kids (ages 10, 12, and 14) do some, too, and probably would more if I didn't bust my rump trying to protect them from what mom can't do anymore.

My doctor is amazingly understanding (takes around 45mins with each patient) and I thank God for him often. He took the time to explain everything he knew and what we could most probably expect to both my husband and me when he made the official diagnosis. We walked out of his office with me devastated and my husband determined.

At home I looked up this site and the Mayo Clinic's site at my Dr's suggestion. My husband reads the FM newsletters with me most of the time.

My mother was a much much harder person to get to "hear" me. Six months of forwarding her my WebMD FM newsletters, and various studies about FM from all over finally got her to start to understand. She was the only person on that six person email forwarding list who "heard" me, which is a bit of a bummer.

In the end, though, I'm just deeply grateful the people who are closest to me emotionally mostly 'get it'. Sometimes Mom forgets which stings; the "hey wanna go to your brother's concert tonight?" calls still make me wince. A short "it's not a good day for me, Mom" is enough for her to understand again.

Sometimes I wonder if it's that the people who love us don't want to treat us differently than they used to, or simply don't know how to treat us at all.
 
avatar
KatmanduLou responded:
I'm SOO lucky to have a DH who gets it! In fact, then the doc first mentioned it to me, DH was on the computer in a shot, looking up what it is, what treats it, looking at alternative treatments, etc. He still does from time to time, and recently declared that my "it's hot in here" comments at bed-time are the result of the amitriptyline.

My doc, and hid PA, are the most wonderful team! Of course, they get it, but they really really listen. No matter whom I see, I never feel rushed, usually I get a "hold that thought" while he or she madly types my babbling into the computer.


My sister gets it - she's a hairdresser and has a few clients who have it. She saw me at a meeting last month when I was having a flare, she almost gave me a big hug, but pulled back in time. She's a cancer survivor and is very in-tune with health matters, and called/e-mailed me daily for a week after that meeting.

One of my brothers gets it, he's in nursing school. The other two are too wrapped up in their families, jobs, etc. to even care. As for the in-laws, some care, some don't, and I mostly stay away from the ones who don't.

My parents, Dad in particular, just listen and nod. Dad thought he could "cure" me, and sent for a package of info from a chiropractor's ad he saw in the paper. The chiro claimed he could CURE FM! I explained that it was snake oil, and that ended that. Mom has alzheimer's, so Dad has his hands full.


Helpful Tips

~FM TIPS - LIVING W/ FM - TOOLBOX ~WELCOME NEWCOMMERS~
Welcome to Our FMily! My name is MeMe, I'm an FM suffer of 19 years, along with autoimmune diseases & other conditions. ... More
Was this Helpful?
471 of 546 found this helpful

Related News

There was an error with this newsfeed

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.