just need to rant - lack of family support

We all have these issues i am afraid...we are lazy or dramatic, or trying to get out of things. Maybe we should say a thankful prayer that they have no idea what we are talking about.
Even worse are the ones who try to act sympathetic to you, but then say you are dramatic to others.

Oh ps..love the doctors that tell me ...you are not imagining this...lol.. If my imagination was that good ...i think i could imagine something better : )

I totally understand how you feel. Family should be supportive. I hope you at least have a good doctor who understands. I got lucky after three years and finally found two who I think really understand. I am going through some of the same problems. I live with my sister and I'm starting to think she sees me as just a maid not really caring how I feel. She got three dogs despite my protests and rarely does a thing for them so it falls on me. She went away for 6 days leaving me to take care of them and the house while they were sick...and one of the first things she did when she got home was yell at me for forgetting to take the recycling out.

I know how you feel too. I just don't bother to give those family members a moment of my time. My husband has got better since I have been on disability. Even my Dr's are not all convince about fibro. Fibro is so under stated. It amazes me how fibro causes so many symptoms. I had a person interviewing me for neuro/ psych test. He wrote down I had somatic symptoms. I was mad after reading this. He didn't know I had fibro I bet and knew nothing about fibro I guess. Most medical people never realize the extent of symptoms of fibro.

I don't have much to add to the spot-on comments already made here, but I surely sympathize with you.

Strange, but those we *think* will understand are often those who totally don't get it at all. I remember a friend suggesting I get a job so my mind would be off my pain.

Voila--as if the problem would be solved and my health would be fantastic (don't I wish!).

Sometimes it makes you want to carry a CD or something explaining fibromyalgia and how it affects people...and play it again....and if they don't get it, play it again....and again....but some people, I think, choose not to understand, even when the evidence is clear.

So sorry you're dealing with this and what an irritation. Gentle hugs back!

Diane, I'm sory you are hurt by this. Actually they didn't call you a liar but they did imply that your pain and fatigue is psychological and not physical. This tells you that they are ignorant on the subject of fibromyalgia. I find it's no use trying to explain to people like this because I get frustrated and angry and they just won't listen. They have made up their ignorant minds and have become judge and jury.

Please don't let these people have such power over you! You take control. If they try judging you again, let them know there will be no more discussions about fibromyalgia....ever again. If they continue, leave the room. Don't give them this power to upset you so much. It just leads to more pain!

Donna, if your situation happened to me. I would have stopped the car in front of the handicapped space and would have then told them they better get out of the car quickly because I AM parking there...with my doctor's blessing.

I've had a handicapped placard for twenty-five years. One of the first times I used it I was 42 years old. It was at the grocery store. I walked in the store, minding my own business, and some jerk came up yelling at me saying I shouldn't park in the handicapped spot. At that time, the placards were laid on the dashboard and he probably didn't look to see if I had one. Nevertheless, I was ticked off so I told him to call the police on me. Oh how I wish he had. He would be the one in trouble. But it did shut his stupid mouth.

Doctors don't give these out unless there is a good reason.

Sherrine

Thanks everybody for sharing. Know I am not alone - but still bothers me.

I do not not think I have ever told a (big) lie in my life
(May be a 'white' one like 'you look great'. ;-) )

I mean am pretty sure my family doesn't think I'm a liar

So why would I lie now
& lose not just career but friends, ability to travel, which I use to enjoy so much.

Baffles me.

Now that I experience pain 24/7 I remember, in my younger days, seeing/hearing folks talk about arthritis, etc
I never doubted them .- or think they lied. Never.

Many people think fibro isn't a true illness, Diane. We all know arthritis exists but there are still some doctors out there that don't think fibro is an illness....it's all in our heads! Pretty crazy, huh? I think that where this questioning of our pain comes from.

Sherrine

I'm going to be rude and I apologize if I offend someone, I love my family and friends but I dealt with similar issues before.

It takes a bit of training, but here's what I do:
I explain to them nicely. If they get it. Good. if not, pass to the second step.
Second step is explaining again, nicely but with firmer words. If it works, good. If not, third step.
3rd step: I explain again, with medical facts. And I stand my ground.
If someone say to me something like Vestabula's relative said, I will just tell them that it's how I feel, and if they don't get it or don't understand, they can shove their opinion about how I feel up theirs. Or if they lack comprehension, they can just deal with how "I" feel, because I'm what's important in my life. Not their opinions about how "I" feel.
And I can be a b...h about it.
"Oh you won't use that spot as long as you're in the car? Well have fun waiting while I go shopping!"
It takes training to stop caring about people's opinion, but I think it's needed.

What we need to realize, is how we feel, how the stress they throw at us affect us, making us walk more or do things we don't have the energy to do, and I had to stop caring what people think.
Like, literally stop. Cut myself emotionally from their opinions and bad attitude.
If they get it after I explain and say how I feel, congratulation, you'll still have a part in my life.
If not, I won't call them again and I won't care about them.

I know I should have taken that parking spot but I felt guilty by the remark "There may be someone in a wheel chair that really needs it." It was a very crowded parking lot and finding a spot anywhere was difficult. I guess I'm easily intimidated by remarks like that. There won't be a 'next time'....Malls are no longer on my 'to do' list.

I got that handicap sticker three years ago after falling on the ice in a grocery store parking lot due to instability and lack of balance (I also have Meniere's disease). I asked the doctor for a temporary sticker for the winter and he gave me a permanent one. If I'm having a good day, I don't use it. Like others on here can attest to, if you aren't on crutches, a cane or in a wheel chair the pain isn't always that obvious to others.

Donna

Post Edited (vestabula) : 5/16/2014 6:06:20 AM (GMT-6)

I've heard so many stories about rude comments made by strangers to people using handicapped parking spaces. Goodness--do people not realize that there are many different medical conditions which may be 'invisible'?

How many people, for example, with heart conditions have disabled parking tags? They, too (like us fibromites), may otherwise look perfectly healthy.

It boggles my mind to think there are people judging where one parks when they don't even KNOW the other person's health history--or even know the person at all!  I guess some people have nothing better to do than to watch who parks in the handicapped spaces, eh?

Sheesh.

I
Before we were injured did we automatically think handn this state temp handicap parking permits hang on rear view mirror

Evidently, despite the large size of these, some folks either do not look for them, or believe only permanent handicap license plates are legal.

I have had several people chase me down, none asked me if perhaps I made a mistake or was in any other way polite - just got in my face & yelled.
(BTW I wear several support braces due to physical injuries so there IS a visible sign that maybe, just perhaps, there is an injury)
Being raised in the South, first off, I politely decline to reply in kind. After first time, when I was taken by surprise, now I say somethink like
"Permit can be seen thru windshield as it hangs from rearview mirror", however NOT ONE has yet stayed long enough to hear that one sentance.

Bothers me a little
But nowhere near as much as family & friends like Vestabula.. the shock of their words is like a slap in the face.

While these posts are painful to read/write they help me (and other too I am sure) so much. Thanks!