MDJunction - People Helping People
 
Ask a Question
12/17/2010 02:18 PM

Looking for understanding, need to vent!

Lightworker
 
Posts: 58
Member

How can those of us who suffer with fibromyalgia get others to understand that the pain, fatigue & wide array of symptoms are real & valid???

I'm at my wit's end here, very frustrated with my family. They don't understand how I feel. They just don't get it. Just because they can't "see" my illness, they try to discount it or infer it doesn't exist.

Because I am no longer able to work & support myself, I have had to move in with family (at the age of 54) in order to survive. It was this, or be on the streets. I am grateful for my niece & her husband, as they have provided me with a place to live while I battle to get approval for disability. My niece is a go-getter, a hard worker & she believes everybody needs to work & pay their way. I agree with her, and if I were physically & emotionally able to work, trust me, I'd be working & taking care of myself.

I did not choose these health problems. I would not wish my pain & fatigue on anyone, not even my worst enemy. I try not to be a complainer, I never whine. It would be nice to be able to express to my niece that I'm in pain, to talk to her about my concerns over the ins-and-outs of the disability process & so on---but she doesn't want to hear it.

Today I found out my my disability adjudicator that SSD may send me for cardio-pulmonary studies because the doctor who completed the med exam stated I have an irregular heartbeat & heart murmur. (I knew nothing of this until that convo) I admit I'm a little freaked out over it & tried to express such to my niece. She waved me off like it's no big deal. Well, it's a hell of a big deal to me and I'm freaked out over this.

I guess the best thing for me to do is to not bring up the subjects of pain, fatigue, fibro, disability, etc. in convo with her. It wouldn't be so bad if I had someone else to talk to about this stuff.

Rant over, carry on.

Reply
 

12/17/2010 02:46 PM
violett
violett  
Posts: 3376
VIP Member
I'm an Advocate

Sometimes younger people act like it is nothing to avoid frightening a sick person more than they already are. they think they are soothing our fears. Also, it seems that people who have never been sick tend to minimize illnesses because they have nothing to compare it to and can't imagine how bad it really is.

Wish I knew more to say. I've not had this problem yet, so have no experience to draw upon. Best wishes to you. Let us know how you get along. I hope things can be settled for you. She really needs to understand. Could you take her to the doctor with you and ask him in advance to explain it to her? That might help.

hugs,

violett


12/17/2010 03:46 PM
mammy
mammy  
Posts: 7217
VIP Member

I'm sorry for what you are going through, it just doesn't seem fair, does it?

Since your niece is not willing to "listen", perhaps if you write her a letter, tell her how you feel both physically and emotionally and that her dismissing your feelings makes you feel worse. Explain to her that you're not looking for her sympathy, just want her to try and grasp what you go through and also include how much you appreciate that she is providing a roof over your head.

It is very difficult for most of us to get people to understand this "invisable" illness and some kind of support would definitely help ease your burdens. I know it's not the same as someone in your life, but you are not alone, we are all here for you and will do what we can, we don't judge, we listen and truly care what you go through and your struggles.

I don't blame you for being a little freaked out about the heart issue, I would be too. Try not to stress over it until you have all the facts in. There are meds that can treat that condition if you do have it.

I wish you the best of luck and if it's okay with you, I will add you to my prayers. If you ever need to vent or just chat, you can PM me anytime Smile


12/17/2010 05:14 PM
faieriemama
faieriemama  
Posts: 3346
VIP Member
I'm an Advocate

dear friend so sorry your niece is not very understanding of how you feel. Sometimes really thealthy people just aren't able to grasp how womwone with chronic pain feels everyday. The idea of a letter is a good one, if you wanted there are some great ones on here that you can print out and give to her that may help. Check out the Articles section on here for ones like "letter to normals". Feel free to PM me any time you need to talk. blessings bright and many.

12/17/2010 05:58 PM
PCG
PCG  
Posts: 2259
Senior Member

So sorry for what you are going through..

As stated before, we are here for you, no matter if you want to vent, cry laugh or freak out Smile

I know it's hard but try not to worry yourself too much about the murmurr and the study, it will only make things worse for you, may even induce a flare, so try to relax yourself and do stuff that takes your mind of it.

Talking to younger people can be hard, all my friends are on the 30's or below, and making them understand what I can or cannot do is almost impossible... yet you have to be patient, it is really hard to understand something you don't have the grounds to process... sometimes the smaller problems can give them a clue of how your life is. My brothers got an idea of how hard things were for me when they saw me unable to lift my toy poodle dog once...

I hope things smooth out and that the study goes well Smile

Hugs

Paula


12/18/2010 07:08 AM
Lightworker
 
Posts: 58
Member

Thank you everyone for your input. I really appreciate it & knowing that some of you have experienced similar situations does make me feel better. Maybe I should have mentioned that my niece isn't that much younger than me, she's 46 and I'm 54. (my older sister's middle child)

12/18/2010 07:16 AM
Natalia5150
Natalia5150  
Posts: 3632
VIP Member

I am verry happy you asked, a lot of us oldtimers do this:

http://www.butyoudontlooksick.com/articles/written-by- christine/the-spoon-theory-written-by-christine-miserandino/

it really helps us explain why we dont look sick but still have no energy....I reccomend you pribnt it up and then give copies to whoever has doubted you in the past. It fits so many conditions and illnesses.

Click and go read then print it up and make copies from your printed originals. You'll see.

Hugs

Natty


12/18/2010 07:37 AM
broken
broken  
Posts: 11091
Group Leader

my all time favorite suggestion came from a member who suggested leaving reading material in the bathroom,gotta love it..

its the ah they are lazy senerio..how do you exsplain you are not just hurting and battling..

I to have a friend who nevver sits still, she though understands my situation.but others dont and I feel so guilty seeing be poppers running around doing while we cant join in..did your niece understand your problems when you moved in?I dont envy your delema it is so hard living with family...I know you so appriciate her letting you come to her home..

when filing for disability I found having a doc on your side is a must...good luck to you..and remeber some times we see in others what hurts us the most..


12/18/2010 07:46 AM
Natalia5150
Natalia5150  
Posts: 3632
VIP Member

Ditto everything Broken just wrote. I am sorry you are hurting , but truly believe when you read the spoon theory some of what is happening to you, you will begin to understand what is happening and why.

hugs

natty

Post edited by: Natalia5150, at: 12/18/2010 07:47 AM


12/18/2010 08:33 AM
Nitalynn
Nitalynn  
Posts: 1404
Senior Member

Maybe you could approach her by saying that it is not that you don't want to work but that there are no jobs out there where employers can and will conform the job to meet your needs because of the condition. Mainly the fact that you only know how you will feel that day when you wake up in the morning.

I went back to school and have educated myself in something I can work on when I feel like it and will have a website to use to access the public with my end products. I am not saying this is your solution but if you could involve her in the search for some solution to your problem rather than her saying you should work and you saying you can't you could make more headway with the situation with her.

If I were you I would sit down and make a skills assessment on yourself of things you are qualified for and the limitations put on them by your condition.

A few things she needs to realize is that just going out and getting a series of jobs that you have to quit or get fired from is in no ones best interest. She is just going to get mad at you, the employers are losing out because they are spending money to training someone who cannot do the actual work and not only are you getting black

marks on your work record as far as any potential employer is concerned by getting and then quickly quitting or worse getting fired from a series of jobs, but also the stress might cause your condition to quickly deteriorate into a bedridden situation because for most of us stress is our worst enemy.

Reply

Share this discussion with your friends:
<< Start < Prev 1 Next > End >>


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved