Lack of understanding regarding diagnosis

Lack of understanding regarding diagnosis

How do people cope when a family member does not understand about the effects that fibromyalgia has on you, to the extent that you are being accused of faking it just to get out of work! When you try to sit down and discuss things you get told to 'shut up' or 'I have pain to and have to get on with it'! (Especially as this family member has been told options to treat pain but refuses treatment!)

A MyFibroTeam Member said:

I have a partner of 22 years..and we both have our own place.It works out great for me...I can rest in between visits..I don't have to cook everyday..or laundry..by nature I am a caretaker..so when I lived with him..I could not stop myself from over doing it....and when we do visit..we have more quality time because I am rested..

posted about 2 years ago
A MyFibroTeam Member said:

I was diagnosed 18 years.(but as most of us realize,we have had it all a long).It is a hard realization.that most will never understand,what it is like dealing with Fibro on a daily basis.For them it easy to forget,in 5 minutes,and say ." ( by the way can you do this for me?,,,,even after just saying ."I hurt.I am so done").In reality,I guess unless you experience.something,hands on, its impossible to step inside someone else's shoes).It is so frustrating ,I know,but since this is a "knowing" now after 18 year..all I can do is protect myself.If I feel the pain rising ,I excuse myself and say I am going to go lay down for awhile.In my room ,I have everything,that makes me happy...snacks LOL..Music..the phone to call a Fibro friend...good books...etc..When the pain level goes down and I feel human enough to smile,or have a conversation..I come out of my room.Otherwise I am faking it..,and I really don't hear anything they say..when I am exhausted..or in pain. .Pain takes my attention away from most things going on in the room..so its better I go take care of myself..I think this is the answer...think of thing..that you can do go rest..in peace and alone..then come back ..Gentle Hugs your way..I truly understand..!!

edited, originally posted over 1 year ago
A MyFibroTeam Member said:

I have the same issues with my husband. I can no longer work and instead of flare ups it is all the time. When you get up it’s ‘oh hello your hurting today are you !? I used to be on the go all the time but now even breathing seems to take it out of me. I also have thyroid issues and sleep apnea as well as 15 yrs of restless legs which now wants to generously share itself with my arms! My husband says I do understand but then will come in and say ‘what have you been doing all day?’ I also have fibro torettes which consists of , ouch, ahh and god sake. It is frustrating to have to keep reminding loved ones that you are poorly and do not choose to be in this position. I can see why someone would split up with a partner who seems to think you should just get on with things or does not take the time to read up on fibro or take it seriously either. Understanding and compassion is the key so you do not feel quite so useless.

posted over 1 year ago
A MyFibroTeam Member said:

You might want to have that person read a few post on this site to make them understand your condition is real and the struggle you go through each day. The issue with FM is more than just the pain, it's also chronic fatigue, depression, anxiety etc...If the person is not willing to try to understand and not a direct family member I would stop discussing my health with them. No one has the right to judge us. We do it enough ourself on our down days without having to justify ourself to others. If they can't accept you, they should not be part of your life.

posted about 2 years ago
A MyFibroTeam Member said:

I hide it all the time. My daughter's only 23 and thankfully has never truly experienced chronic pain. Most everyone has at one time or another had acute pain so their understanding of a chronic, invisible pain is limited. So at work, I just get by some days. I'm the executive director of the largest domestic violence in our state so there's a lot on my shoulders. I also write all the grants and God forbid I'm having a really bad time, it's impossible to focus.
I'm with you Debbie, sometimes I wish this were more visible, people would be shocked! My heart goes out to all of you because I do understand. I have a wonderful doctor who specializes in chronic pain, he helps me keep it managed. All we can do is try to take good care of ourselves, space out the housework (!) and I guess be glad it's not worse than it already is! And keep smiling. If I didn't have a good sense of humor, I'd never get through the day!

edited, originally posted over 1 year ago
Browse more questions and answers
Continue with Facebook
Sign up with your email
Already a Member? Log in