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Spouse just does not get it
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Anon_6772 posted:
Does anyone else here with fibro/cfs/migraines/& other medical issues have a spouse that still, after living with you for many, many years, still does not get or want to get the extent to which you suffer? Im so tired of being looked upon as lazy, unmotivated & a whiner. I did not ask for this, Ive tried to keep on in the work force, trying different jobs, with varying schedules & I just cant work-not even from home. The thing is, no one seems to get the fatigue(laziness), the dibilitating side effects from all of the meds, & the decreased mental acuity & brain fog(stupidness). The only part of this illness that is even remotely understand is the pain, but that is the least of these issues, but that alone keeps me from working.
Im awaiting a hearing date with a judge to appeal ssdi denial & I keep hearing that I could be working from home. If I could work from home(which I was fro the past 6 years, I would be doing that!! I guess I just enjoy not having a penny to my name & not being a function member of society.
Im in a fog & rambling, sorry. I just wondered if anyone out there has a spouse that understands, who does not judge & is helpful with your illness? Maybe Im doing something wrong, here.
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dollbug responded:
Hello.....MiMi in NC....actually there are a lot of people who do not understand FM....including some doctors who do not even believe that FM is an illnesses...I do not think that people can believe us....because a lot of us do NOT look sick....or that one day we might be able to do things and the next day we can not do anything....

The wrath of the dragon is a very unpredictable illnesses....with no rhyme or reason for when it picks on us....or appears...heck...there are a lot of days when I do NOT even understand it...and I have been trying to deal with it since 2005....

There are things though that will help you cope better....especially with the pain...I have figured out how to "control my FM pain" by taking vitamins and supplements and doing other things as well...but I have found nothing that truly helps me with the "chronic fatigue and fog" that I have....I have a big issue with keeping up with things and doing any sort of "project"....just reading a book....I have issues with...

In the past I have been in banking and worked for a loan servicing company where I disbursed millions of dollars to tax offices and insurance companies each and every month...I did the EDI system and had to be able to figure out any sort of errors....so at one time....I was able to do things that are complicated and complex for a lot of people to do...

I wish that I could indeed answer your question....with a simple answer...but to be quite honest I do not think that there is an answer of why we are like this...

I hope that you are approved for your SSD....and if not, then I do hope that you will again appeal the decision....as the government does NOT seem to understand this mean and ugly illness either....which certainly does not help any of us without a lot of stress...

I applied and got denied and appealed the decision....and then I contacted my state representative and I did finally get approved....

I hope this helps you out some...I do hope that you have asked your doctor to check your Vitamin D level....if not....talk to your doctor on the next visit...as low Vitamin D can cause additional pain for some of us...and it can also affect other illnesses as well...

Take care and good luck....


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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NeNe_11 replied to dollbug's response:
So you understand the work thing. Thank You. I was in the insurance business & have even tried retail & other less "stressful" part-time jobs, but any job=tons of stress to my fibro body at this point. On another note, I am sitting here wondering if I can manage to put up Christmas decorations-each year I have done less & less & the thought of even digging out a door wreath & pre-lit tree is freaking me out!
 
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angelswife responded:
I know my husband will never completely understand Fibro, for the simple reason he doesn't have it. You are not doing anything wrong.

The biggest challenge with Fibro is that it's an "invisible" thing. I can look the peak of health on the outside, yet feel so tired I can barely move. I can't tell you how many times I've felt like absolute roadkill and someone has come up to me and said, "Wow---you look great!" It has been said here that trying to explain Fibro to someone who doesn't have it is like trying to explain the color red to a blind man. It simply can't be done.

This is why this group is so important. I can come here and say I feel tired or I really hurt and I don't HAVE to explain myself. I will never have full support from those around me because there is no way they can understand---I say this not in negativity but as a fact. You can't understand what you haven't experienced.

One thing I have learned over time is, when someone has a judgement about me, he isn't saying ANYTHING about me. He is telling me his perception of me only. I can't control how others see me, and I've gotten to the point I don't even try. My energy is precious enough that I can't waste any of it on that type of frustration. I only end up feeling bad.

My point is, I may dislike the Fibro, but I am okay with who I am in spite of it. People can say what they want about me and I truly don't care. It has nothing to do with me at all.

I hope this ha made sense for you---I am in a heavy duty fog myself, lol. I just wanted to let you know you are not alone. You can lean on us for support whenever you need to. Someone is always here.
 
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JRFrogger replied to angelswife's response:
I just recently tried to educate my family anout Fybro, with not much luck. My mom as she would put it at times, :stress wasnt in our vocabulary". We just had good days and bad and we dealt with it. I know she is a good sounding board but I need more encouragement and I think reading your story it puts things into prespective for me. People and even family just dont get it, and I have tried to have them google Fybro with better explanation than I am able to give at times. Thats why I joined this message board I cant seem to find a help group where I live. Take care all
 
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Marylyce replied to angelswife's response:
Sounds like you are down about your spouse's perception of Fibro pain etc. I hope you're not saying that he says your lazy, or stupid etc. I believe most people don't understand fibro because they don't want to believe this could happen in real life or maybe happen to them. I do get alot of help and support from my husband but what I lack is alot of mental/emotional support at times.
I can't work right now either. I don't know if I ever will be able to but I might be able to work a home job at my own pace. I will wait and see if that day comes. If not, I just have to deal with early retirement at age 62.
Keep yourself going please.
 
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Anon_6772 replied to angelswife's response:
You are a Godsend, Angelswife! That is what I needed to hear today. I have been feeling really down about the financial situation & relationships seem to failing. I have allowed myself to become bitter, resentful & cynical with my spouse & his unwillingness to understand. But his undertandof this has nothing to do with the person I am.
 
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foreversore responded:
I too have had a difficult time getting people to understand. Because of all of this I have been through 2 divorces and have cut my family from my life. I could handle the not understanding part if only they would have stopped bullying me about my "laziness and lack of motivation." Being around those people just increased my stress therefore increasing my pain and other symptoms.

I do currently have a wonderful man in my life. While he doesn't truly understand he does his best to try and he doesn't get on my case if I don't get the laundry or dishes done when HE thinks they should be done. He lets me pace myself and for that I am thankful. Mt DD 9 is also very helpful as I think she understands more than I would like her to as I think her health is following mine. I see her already going through a lot of the same things I did. Unfortunately my DD 17 is one of the people I had to cut off contact with as she chose to aggravate my symptoms in order to put me out of commission so she could do stuff she wasn't supposed to do. She now lives with her father.

I too used to have jobs that were mentally and physically stressful. By the time i would get off work I was exhausted but I wouldn't let myself even sit down until dinner and housework were done. If I did sit down that was it I was done. Now, I can't even keep up with the housework let alone a job. I am working on getting started in the disability process.

This life certainly isn't easy. When no one else understands what you are going through...come here and we will without explanations as we go through a lot of the same stuff. I am thrilled that at least 1 other person on Earth "gets it". As for those around me I will surround myself with those that at least try to understand and those that refuse to try well...I don't have time for that anymore.
 
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dollbug replied to NeNe_11's response:
Hello NeNe.....MiMi in NC...yes....I do understand the work thing.....I also understand that for whatever reason....our minds do not always agree with our bodies....I can do all sorts of things in my mind....but my body does not have the strength and energy to carry them out...

I am sure that I could make a really big mess, if I tried to work these days...if I had the energy to get to work....and I am sure that I would not be able to hold down a job....as I do not think that I could manage one...

I think that all of us FMers understand this...

Take care and good luck...


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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Soophie replied to dollbug's response:
Wow what a great way to put it!! I can sit down and picture what I could be doing with great ease, but my body doesn't allow it. In fact I struggle with it everyday!! I look outside and it's beautiful and I can see myself walking the dogs, or gardening, or cleaning my house!! Then I goto move and I am exhaused or in pain!! I just hate it!!
 
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battleforlife responded:
Sorry to hear about your husband, not being sensitive to your illness. I too have the same problem. I have had FM for 4 years and been on all types of medication with no help what so ever. I also suffer from carpal tunnel and tendinittis on both wrist and migraines, as if FM is not enough. I too been trying to get disability and been denied twice already and I just keep fighting it. I recently took a job in a call center and due to migraines and depression my doctor took me out of work. I have been on short term disability from work and hopefully this will be enough for my disability to be approved. Its sad because, I do have 2 small children. An 8 year old boy and 4 year old girl. Who I love so much and yet due to this depression I am in, I wish I never had them. If I didn't had them, I would not be here right now. I have been so suicidal. I know, I can't do it, because I could not bear to hurt my children in that way. I've even talked to my husband about divorce. I am only 36 years old., I don't want to live this way any more. At times , my husband and I fight over the medication I am on, we fight because they are not cheap. Lyrica alone is $50 for copay, and Cymbalta is $30. Not to mention medication for migraines, depression, doctor visits, which I see a therapist, a pain management clinic and my personal doctor, a neurologist for migraines. Paying all this money on the monthly basis and still not getting any type of RELIEF. So, we agrue about the money we spend monthly for nothing, to top if off, I currently am not working and don't know whether or not I can continue too. I worked so hard , in my teen years and twenties , to now not even being able to clean my house, play with my children, or even being sexually active with my husband. This illness really Sucks, its taken everything I worked so hard for away. Leaving me feeling so useless, hopeless, empty inside. I cry every day, wishing I didn't have people that love me , so it can easy for me , to just leave this world. My husband needs for me to go back to work, we are behind on everything, and with Christmas right around the corner, things really suck right now. I wish I had something that is curable, or something that could kill me. To think I am only 36 and have to live with this for many years to come. I commend all you, who have this and still have a life and hope. I too have pushed my family away, I am embarrassed, ashame to have this. I don't know what to do anymore , how much longer can I hold out. We are even going to try to move down south , so that the winter cold doesn't do me in, but I don't even know if that will help. Its terrible to put my children and husband through this. I wish you all the best. Thanks for listening to me vent, you guys help me more than my therapist, because you all know how I feel, the pain , the worthlessness, family not understanding. They will never fully understand.
 
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MsSkookumchuck responded:
hello,
Sorry that your spouse doesn't understand. My spouse doesn't either. my conditions are similar to what you wrote and he still insists that i get out there and find work. We are going thru some rought times with money too. I have applied for social secuirty before my diagnosis and have not received a decision yet. I hate feeling like a waste to society and having severe fears now of leaving my home makes it even more difficult when i do have those good days few and far in between. You are not doing anything wrong, most men don't understand severe pain and try to ignore it and think that we can too. you are not alone.
 
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MsSkookumchuck replied to battleforlife's response:
too know your pain of the battle for suicidal tendencies. after i lost the job of my dreams for being out sick too often, i attempted suicide. I cannot afford the therapy to fully recover. The meds i'm on cost about 150$ a month and i take more meds than my father in a nursing home. He says to me that i should be in there beside him because i'm worse off than he is. Money doesnt grow on trees but something has got to give soon. I cant find a part time job with these symptoms and waiting on disabilty i will end up losing my home. Gotta love govt and speedy processing.
 
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JBirdFletcher responded:
First I want to say sorry that your spouse is not very understanding. It can make life H*** when a spouse just does not get it.

One thing that might help is to understand that being diagnosed with a chronic illness causes us and those around us to go through the grieving process. We do not all go through this process the same way or at the same time.

Some of us even get stuck in this process. Not personaly experancing our pain, lack of energy or even our brain fog tends to help get one stuck in this process. In time they may find their way though it and they may not, it depends on the way they view themselves and the world around them.

For example when I was first diagnosed my husband did not understand why I could not function as I use to. He understood that I had pain but not the intensety of that pain.

To him is was being lazy, whinnie and just a big baby. There were a lot of arguments in those early days. Why didn't I just do this or do that. Why did I need all of these medications?

I made sure he went to every doctor's appointment with me and that didn't help. He was grieving and not able to understand everything I was going through. He could not understand the pain.

Even as we went through the process of grieving what I was able to do his lack of understanding took a toll.

I married this man because he always spoke his mind and NEVER sensored himslef. He did not care what people though of him.

He married me because I an as tenasious as my terries. Once I get a hold of something I won't let it be.

Several years went by with us butting heads and him not understanding. That is until he injured his neck. It was like a light bulb went on. He understood my pain. I felt bad because he had to experance the pain.

Not everyone is a lucky as I am. Some spouces will never get it. And because of that it makes places like this all that more important. To be able to share frusterations and feelings with people who do understand.

I am sorr that you are having such a hard time but I am happy that you found us here. Know that you are not alone and that there will always be someone here on the board who understands your pains, your hurts and your needs.
I may have dyslexia and can't spell, I may have Brain Fog and not remember who you are, I may have tremors that scare you, I may drop everything I pick up but, By ALL I do it with everything I am!!!


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