Husband doesn’t understand

Cam82

New member
Joined
Jun 23, 2021
Messages
1
Reason
DX FIBRO
Diagnosis
05/2015
Country
UK
Anyone else find it hard to discuss how feeling and the pain to partner ? Sick of getting it rubbed in my face
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,658
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hello Cam82, and welcome to the forum.

Many, many of us understand this! In fact, sadly, it probably is more common that truly supportive spouses.

All you can do is try your best to get your husband to understand. Maybe even show him this thread.

The thing is that fibromyalgia is a difficult thing to understand because the person can look completely robust and healthy and be in constant pain. The person can be going strong one day, able to hike up a mountain, and on another day be unable to get off the couch. The person can be thoroughly intelligent and together one day and forgetful and feeling stupid on another day. It has nothing to do with choice or being "lazy".

All of these things describe me, personally. And I am a person who is dedicated to managing it the very best I can from day to day and I have had it for years and have learned a lot. Someone newly diagnosed has it much worse at first.

It's unpredictable. You don't know when you make a plan whether or not you will actually be able to do it the day it comes, and people think you are flaky if they don't understand what you have to deal with. People who truly love you will do their best to understand and to trust what you say.

Sadly, some people choose not to believe what we say we are experiencing. A person will know someone for years, know them to be trustworthy, and then not trust them on this. It's very disappointing. Personally I think it comes from fear. If they think it is a myth or that you are making it up, then they don't have to deal with the fact that fibromyalgia can strike anyone at any age, including them.

There are thousands of people on this forum. None of them would have chosen this if they had the choice.

I suggest you sit down with your husband and tell him flat out what is going on for you. Explain that a person with diabetes usually looks healthy and like everyone else, but they have to deal with their illness or die. Tell him that you have an invisible syndrome also, and there are many invisible syndromes or illnesses. Which doesn't mean they don't exist.

He needs to be supportive of you to the best of his ability, just as he would expect you to be if he were struck down with chronic pain and other symptoms that make life difficult.

I don't know what you mean by "rubbing your face in it" but that doesn't sound very nice. Ask him to treat you as he would want to be treated.
 

Dusty1957

Active member
Joined
Dec 26, 2020
Messages
43
Reason
DX CP
Diagnosis
00/0000
Country
US
State
WI
I have a son who asked why I am so sick when his mother and father in law get around so good. He holds this against me
 

Forgetmenot

Extremely helpful member
Joined
Oct 6, 2014
Messages
1,476
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
We all go through that .the problem with us humans is, if we’re not suffering from the same thing we simply don’t get it.when I first meet my parter he was all over my illness .opening jars carrying stuff.now after two years he is used to my pain,so it’s becoming normal.And because of that is tends to forget to carry things and open jars .
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,658
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
I have a son who asked why I am so sick when his mother and father in law get around so good. He holds this against me
All you can do is refer him to some good articles on fibro, and explain to him that the reason you don't get around the way others do is that you have a condition they don't have!
It's entirely unfair for him to hold it against you, and I would suggest that his doing so may be making your condition worse.

One thing you can do is refuse to discuss it with him, and if he starts in with words that are unfair to you, simply end the conversation and start talking about something else. Explain to him that you are more than willing to explain things to him but that if he is only going to be resentful you don't need that in your life, and you won't allow him to talk about it if that is what he is going to do. You need to do this for yourself, because that kind of thing adds to stress, which in turn makes your condition worse.

I have removed people from my life entirely for this kind of thing. Of course, with your son you cannot do that (or, anyway, sure do not want to) but you can insist that you won't listen to his talk if he is not going to be supportive.
 

Peachy

Member
Joined
Jan 14, 2021
Messages
24
Reason
DX FIBRO
Diagnosis
06/2017
Country
CA
Well put sunkakola. I would acknowledge that this is one of the most challenging aspects of fibromyalgia and chronic illness in general, when it is invisible. The terrible loneliness and isolation that we can feel when those we love are not able to recognise the enormous effort we put into our lives to keep going for ourselves and for others. The inconsistency of our health and how one day we might do very well indeed and the next to be bedridden. My own body confuses me so it’s no wonder that it will confuse friends and family. For me, I find It’s very important to cultivate kindness and nurture towards ourselves and hopefully, a couple of people in our lives will step up and do the same. Self care and nurture our essential though. Healthy boundaries and learning to say no and not being too upset if others get bent out of shape because WE KNOW The incredible effort we put in to showing up every day and being the best version of ourselves in spite of the huge challenge of living with chronic illness.
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
708
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Well put sunkakola. I would acknowledge that this is one of the most challenging aspects of fibromyalgia and chronic illness in general, when it is invisible. The terrible loneliness and isolation that we can feel when those we love are not able to recognise the enormous effort we put into our lives to keep going for ourselves and for others. The inconsistency of our health and how one day we might do very well indeed and the next to be bedridden. My own body confuses me so it’s no wonder that it will confuse friends and family. For me, I find It’s very important to cultivate kindness and nurture towards ourselves and hopefully, a couple of people in our lives will step up and do the same. Self care and nurture our essential though. Healthy boundaries and learning to say no and not being too upset if others get bent out of shape because WE KNOW The incredible effort we put in to showing up every day and being the best version of ourselves in spite of the huge challenge of living with chronic illness.
Beautifully said, Peachy
 
Joined
Nov 23, 2021
Messages
20
MY husband as good as he is in many many was struggles with my fibro, he actually asked me this weekend while we were installing security cameras in our house and running the wires "Why do you always poop out 1/2 way trough any project we do?" I wanted to cry at that point because we had been working for 4 hours with only a 5min break, I basically told him that in case you forgot I do have health issues and my battery doesn't last as long as his. he said to me its hard for him to forget is as I'm constantly reminding him of it. His sister is a nurse and both of us have explained my issues, but he doesn't seem to get it. I guess mainly because of the whole one day good and the next flat on my back thing. I swear sometimes I'm losing my mind myself. Right now I'm sitting at work still in pain from overdoing it and I have no time to rest, I see a large flare up coming soon. I just wish he was able to understand more.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,658
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
MY husband as good as he is in many many was struggles with my fibro, he actually asked me this weekend while we were installing security cameras in our house and running the wires "Why do you always poop out 1/2 way trough any project we do?" I wanted to cry at that point because we had been working for 4 hours with only a 5min break, I basically told him that in case you forgot I do have health issues and my battery doesn't last as long as his. he said to me its hard for him to forget is as I'm constantly reminding him of it. His sister is a nurse and both of us have explained my issues, but he doesn't seem to get it. I guess mainly because of the whole one day good and the next flat on my back thing. I swear sometimes I'm losing my mind myself. Right now I'm sitting at work still in pain from overdoing it and I have no time to rest, I see a large flare up coming soon. I just wish he was able to understand more.
It's really hard for some people to get it, it seems.
What I have been known to say is something like: If you don't really understand, that's OK, because how can you truly grasp it if you have never experienced anything like it, after all. I can be patient with that. But in return I ask you one thing: Just believe me when I tell you how I am feeling. Know that I am telling the truth, and even if you can't see or grasp it, this is a fact.

sometimes that has made a difference. the people for whom that did not make a difference, and who continued to give me a hard time for having chronic pain are simply no longer in my life.
 
Joined
Nov 23, 2021
Messages
20
My hubby is really good is so many other ways, its not a matter of believing me its more not knowing how much I can do from one day to the next. He does understand recovering from extreme pain he had a horrible bike accident and almost died. What really kills me is even though i have been dealing with this for so long even I never know what i can or can not do. When we met my fibro was either well controlled or I was in a remission and was doing a very physical job, actually 2 of them, and I weighed much less and was fit, now not so much, I have gained 60 pounds over the past 4 years and my fibro is out of control. I think sometimes he wonders what happened?? I am on a keto type diet trying desperately to loose some of this weight because I know it affects all my pain issues, but since turning 50 its next to impossible. Any tips would be appreciated.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,658
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
The not-knowing is one of the worst aspects of having FMS. You can make a reasonable plan and then when the day comes you can't do it or you can only do half of it and you cannot ever accurately predict this. I have found that careful managing of my time helps with this although there's nothing that removes this uncertainty from my life. If I know I have to (or want to) do something in the evening, I will not run any errands during the day or schedule anything else, or even clean my house that day. I will only do things that will not tax my energy. If I want to go hiking I make sure I schedule it for a day when I was home the day before and can stay home the day after, if needed. that kind of thing helps a lot. But still, you can be surprised.

I recommend you read my post of Advice and tips, and see if things there help you. If you have any questions, they are always welcome.
 
Joined
Nov 23, 2021
Messages
20
thanks for the tips, I wish I could just go back on my disability, but unfortunately that isn't an option for me at this time, I do not get enough to survive, the whole reason i went back to work in the first place once they no longer gave me a supplement for my kids. Working full time even though its not as active its a desk job is still tiring mentally. I wish I had the luxury of not working but I don't lol, even worse is Since the covid crap my vacation / pto is a mess and NY state changed the laws so I have lost 1/2 of my time to accrued instead of having all of them on my anniversary. I guess I am lucky to even be able to work so shouldn't complain, but some days like today when I am sore from all I did Sunday I just wish I could take time off. it doesn't help the one medication I do take my dr has been lax on sending in the refill and now I'm out of it.
 
Top