Am I alone when it comes to dealing with Family and Friends?

I am new here so if this has been discussed I apologize in advance.....

I have a problem with many of the people in my life...Friends and Family....Not all of them, but a large number act like I am faking because I "look fine". They have no idea what I deal with on a daily basis. I am very good at acting like nothing is wrong when they are around, when on the inside I am screaming in pain, just want to lay down etc...
I get comments all the time like, "get a job", "must be nice to get to stay home", "how were the Bon Bon's today", "We all hurt, it's called old age"...I am 46, I don't consider that old age!!!, and on and on. I see people looking at each other when they think I am not watching and see the eye roll's etc... I have even had a few people tell me that Fibro is not a real disease, that it is all in my head.

My mother was diagnosed after I finally got one. We were both searching for answers at the same time, because we had both been dealing with the symptoms for a very long time with no answers...9 doctors later just for me, I have two of the best Doctor ever now! My mom has dealt with the same types of comments. My Grandmother, who has passed, had all of the same issues and symptoms. She never did get a diagnosis back in the day. Instead she received electroshock therapy, huge amounts of drugs that did nothing except end up ruining her stomach, which they ended up removing part of, severe depression because no one believed her, including her doctors. (My mom and I did) Oh, and the term "hypochondriac" (Yeah, I have heard that one too)! The poor woman.....I believe she had Fibro.

So how do I handle these people? I have tried ignoring it, but it hurts me. I have even questioned myself at times, even knowing how terrible this can be, I am living it!!! I refuse to change what I do because of it. I love to garden, keep a clean house, bake, etc....I still do these things. Not as much of it and because I am home I can lay down or soak in the tub at will. When someone stops and see's me gardening I get, "If you can do that, you can get a job". They have no clue that I will pay for what I did for days! My husband has been wonderful a far as helping me with the "heavy" work and such. He sees what I go through, yet when the comments fly, he clams up and just lets it happen too.

Why do people feel the need to get involved in my personal business? It is none of there business if I have a job or not. I have told some of them this but they keep it up. Please tell me if any of you are or have dealt with this and how you handle(d) it. I could use some new ideas....short of telling them to F*#K OFF!....Sorry about that, but I get frustrated by this. On top of dealing with the Fibro, Who needs this crap?

Thank you
Julie

Hi, Julie, and welcome!  Oh, yes, I think we have all had some of those comments.  But, it's no one's business whether or not you work. I"ve never had anyone say that to me.  I think I'd say it was none of their business and that you do not want them to bring that up again.  If they continue, I'd find other friends.  If you want to be funny about it, tell them that, unbeknownst to them, you are independently wealthy and don't need to work.  Smile and then change the subject.

 

I was having dinner with my best friend last month.  She was telling me something that I didn't know...at least I thought I didn't know.  She pointed out to me that she had already told me and went on to say that I needed to start exercising my brain because I was forgetting a lot.  Oh, was I ever ticked off!  I told her that I have cognitive memory problems due to fibromyalgia and I have no control over it.  She got very quiet and hasn't brought it up again.  If you didn't want to mention fibro, just say you have an illness that causes the cognitive memory problems. 

 

Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are great links to good information there.  One of the links is called The Spoon Theory.  This helps explain fibromyalgia.  Another good link that might help is Doctors Respond to New York Times Article.  You could print these off and pass them around to your clueless friends. 

 

Meanwhile, we are here to help you.  We do understand because we all are going through the same things.  I'm so glad you found us!  Read back post and ask questions and we will try to answer them. You have come to a good place and I hope to hear more from you soon.

 

Sherrine

Welcome Julie... Oh and I see you too over there Carney!!  Glad you found us and I'm sure you will learn a lot from this forum.  I know I have. 

Here's something that might help you.. it was cirrulating around here last week.  Its call A Letter to Normals (click below):

http://fmscommunity.org/lettertonormals.htm

Please keep posting.. we're a family of folks from all over the place that shares your pain, questions and concerns.  We support each other as best as we can and really understand the trials of this thing called Fibromyalgia.

Warm welcoming hugs, 

Hi Julie,

You don't have to tell anybody anything about your fibromyalgia if you don't want to.  It is none of their business.  But as Sherrine has posted, knowlege is the best answer.  That is if the people are worth educating. 

I know that the looks and the comments hurt, but it almost sounds as if they are jealous.  If they only knew, right?

I hope that you can over look it and take it with a grain of salt.  I hope that you feel better soon.

Hugs, Karen

Fibromyalgia separates the wheat from the chaff.  For those that aren't familiar with that terminology, chaff is the seed covering and other debris that is separated from the seed during threshing.  The chaff is useless and is discarded.  The seed is kept and is either kept to grow new plants or it is made into something important to us...food.  So, fibromyalgia gets rid of the acquaintances that were not true friends and allows us to zero in on the really important relationships in our lives.  It's hard, at first, to lose those we thought were friends but we can spend our energy on those that REALLY count.

By the way, last October I lost, what I thought was a friend, to fibro.  She said I had "changed".  We had been "friends" for 34 years.  I was surprised and hurt but I got over it.  And  you know what?  God has given me some more true friends...people that do accept me with my illness.  Besides, I have all of you on this forum so I am rich with friendships.

Sherrine

It is so disappointing and hurtful when friends and family shrug off our pain and confusion.  I have thought about this so much and if I am truly honest with myself I think that I may have the same doubts as all those people if I were not living with this disorder.  The reason I say this is because my mother, who is now gone, used to complain of pain and fatigue all the time.  She would visit and then fall asleep on my couch and she used to forget things that we told her or repeat something that she had just said.  She seemed completely confused at times.  Well, both me and my brother would get irritated with her for seeming so self absorbed.  On the outside she looked just fine.  I am convinced that my mother had FM and I wish I could turn back time so that I could show her the understanding and kindness she deserved.  So because of all of this, I try really hard to understand when others just don't get it.  My new answer to them is "Ignorance is Bliss", smile and then walk away.  I don't have the time or energy to worry about what others think of me.

This forum has given me confidence, acceptance, and a place to go when I need someone to talk to.  Everyone here understands and cares, we are here for each other.

Welcome to all of our new family members, you have found a wonderful place.  I have not been feeling well for the past few weeks and have been to tired to do much more than read the posts.   

I can relate to what you're saying (except that I'm only 15, so no one tells me it's old age and that it's only my friends that don't care). Every doctor I go to tells me my life sucks, they feel so bad for me, I'm too young/pretty (like being pretty has anything to do with it?) and yet my friends really don't care much. It's hard to not have the support of the people closest to you, so I can definitely sympathize with you.

I complained to everyone about how other people weren't paying attention, which only made them more attentive. But since I don't really suggest passive-aggressiveness, maybe you should just talk to your family and friends so they understand how hard fibro is.

Best of luck

Thank you for all of the great tips and suggestions. I have tried some of them, but I am going to give others a try! Sometimes I think I should stop putting on the "happy face" when unexpected visitors drop in and just keep laying down, icing this or that, etc... Let them see how awful this can be. However, I know me too well. I will keep making sure everyone else is happy. I was taught growing up to "suffer in silence"......Thanks mom and dad... What a load of crap!.....LOL

hello i am new to this as well!

but i know what you mean when people say you look fine, i am a 20 year old girl with a very active job ( that i shouldn't be doing ) and everyone expects me to work wonders and do things i can not do and i get comments like "you're too young it's not possible for you to have that" no one really understands, except for a few. it's just a thing that i have to go on with regardless of what people think. such a pain :P

I totally understand. And Julieleaps... I really relate to you.  My husband and I are worship leaders and youth group leaders.  I have really hard days especially getting up for early morning service, then I play for 3 hours altogether with both services.  Then in the evening we lead the junior high group. There are days we have had to cancel youth group or not able to do worship all the time.  I don't need to explain, other than the pain and fatigue.  I have people in church saying you can be healed you just don't want to.  You don't have enough faith.. All those comments including you don't look sick.  I have grown alot thru this in the Lord and just hold my head up but alot of days it is hard.  I know Gods people are to be compassionate and sometimes there are more wolves in their then when you walk out the door.  It must be really hard being a pastor's wife.  Expectations and demands on both of you can be so exhausting in itself.  I just try to remember Paul, perhaps he had fibro.. anyway its nice to know even though others around us don't understand we do have Christ who knows all are suffering.  Somedays it's just hard to remember that and believe too.  much love everyone Denise

Hey Julie
This I'd say is one of the biggest hurdles with having Fibro. and I think it's safe to say we've all been through it, and continue to go through it. I'm only 26 years old myself and male ..... It wasn't until I had a brutal flare up that was so bad I couldn't get out bed, yet didn't sleep for 4 days that mom really believed what I was telling her. It wasn't until after who knows how many tests, xrays, cts, mri's, and a diagnosis from a Rheumatologist that my family doctor actually believed me and what I had been telling him for years and prescribed some actual pain killers.
Sometimes It's not till you actually find something helps you to start feeling better that people start to realize, there was a problem for a long time. I know it's frustrating when even family or doctors don't seem to believe you. "Hang in There" ... that's the sound advice I was given by my doctor for years .......... hahaha thanks.
Maybe the best way to deal with things is just to laugh them off, of course that's easier said than done. Like I said I'm 26 and friends of mine now call me " gramps " (because I say I feel like I'm 80), and or " grey rocks " (I'll leave that one to interpretation)


Take Care