Wife still doesn’t believe me

[Jpac]

It’s truly unbelievable. A woman I have taken care of for over 20 years just looks at me like this is all in my head. She is constantly telling me...

“Everyone has fatigue”
“I have convinced my self I have it by reading so much about it”
“You are not trying”
“If you believe you can get better you will”

The crazy thing is I’m not looking for a shoulder to cry on...just somebody I can talk to every now and then. Like I said...amazing.

 

[ScottTriGuy]

Sounds like you feel betrayed.

 

[Jpac]

Sounds like you feel betrayed.

No doubt, but I’m open to being wrong. That’s why I posted comment...maybe someone can straighten me out.

 

[AnnaDove]

I'm so sorry you're having to live with this illness and such lack of support from your wife. Lean on us. We believe you and we are here for you. Anna

 

[Snowdrop]

Hello @Jpac

There are places to find validation of sorts for what you are experiencing as ways to explain to your wife. Some places to look:

https://www.unrest.film/

http://www.investinme.org/lander17.shtml

https://www.meaction.net/

Your wife's attitude is steeped in the false but (until recently) mainstream narrative that has it's roots in psychiatry -- and it's rather a long story.
You can read about advocates tearing apart the extremely poor and biased research supporting the view that we're all just slackers --Here:

http://www.virology.ws/mecfs/ the beginning starts at the bottom (older posts) and works it's way up. This blog series by David Tuller is not finished until the attitude your wife holds is demolished.

Hope that something here helps. This illness is difficult enough.

 

[Jpac]

I'm so sorry you're having to live with this illness and such lack of support from your wife. Lean on us. We believe you and we are here for you. Anna

Thanks Anna! I appreciate your support.

 

[Jpac]

Hello @Jpac

There are places to find validation of sorts for what you are experiencing as ways to explain to your wife. Some places to look:

https://www.unrest.film/

http://www.investinme.org/lander17.shtml

https://www.meaction.net/

Your wife's attitude is steeped in the false but (until recently) mainstream narrative that has it's roots in psychiatry -- and it's rather a long story.
You can read about advocates tearing apart the extremely poor and biased research supporting the view that we're all just slackers --Here:

http://www.virology.ws/mecfs/ the beginning starts at the bottom (older posts) and works it's way up. This blog series by David Tuller is not finished until the attitude your wife holds is demolished.

Hope that something here helps. This illness is difficult enough.

I will keep trying. Thanks for helping.

 

[M Paine]

Keep trying buddy. She will come around. Try not to get angry with her, it will make things worst in the long run probably.

Try to find a doctor (if you havn't already) who is up-to-date with ME/CFS, and get a confirmation diagnosis. If you are having this conversation with your wife, it might be helpful to be able to remind her kindly that a trusted medical professional has diagnosed you.

 

[Dechi]

I’m so sorry your wife doesn’t believe you’re ill. Unfortunately it’s all too common with family. I think some of it stems from fear of you being ill and what could happen if it were true. It’s pure denial.

If denial is the first step towards acceptance, then it’s okay. Problem is when people stay stuck in it. The only thing you can do is provide her with medical documentation and hope she will get to the next level.

I had the same problem with my family. They sort of came around but it’s not perfect and sometimes they will say hurtful things. I try to let it go, but when it’s your wife, it’s a whole different game. I hope she only needs time.

 

[xak53]

It’s truly unbelievable. A woman I have taken care of for over 20 years just looks at me like this is all in my head. She is constantly telling me...

“Everyone has fatigue”
“I have convinced my self I have it by reading so much about it”
“You are not trying”
“If you believe you can get better you will”

The crazy thing is I’m not looking for a shoulder to cry on...just somebody I can talk to every now and then. Like I said...amazing.

I totally understand my G.P did NOT believe me for some time and still thinks it is in my head but when she thought there was something wrong she wanted to give me psychiatric drugs and antidepressants!! even friends doubted me you can tell by the looks in doubting faces, it is very frustrating and one can even doubt themselves.
But the truth is we are ill and I believe you.

 

[Mary]

No doubt, but I’m open to being wrong. That’s why I posted comment...maybe someone can straighten me out.

First I know what it's like to live with a spouse who thinks it's all in your head - I've been there, and it's not good. The illness itself is bad enough and then add on disbelief etc from family, doctors, everyone, it's crazy making.

I am curious what you mean by saying you're open to being wrong - do mean maybe you think you might not have ME/CFS? or that you think it's wrong to want the support of your wife? It's unclear to me what you mean by being "wrong".

It can be very hard to figure out what's going on healthwise with so little help from the medical profession so it can take awhile to figure out if a person has ME/CFS or not - is this what you're talking about?

 

[Chipper]

I feel for you. My husband of 30+years doesn't get it. Mainly its because of how he's wired- raised to repress his emotions- so there's goes emotional support fromp him- He intrudes, gets frustrated- i call it anger- and i just remove myself from him- even though i need him to care for me at this point. it's rough but you can't get lemon from a rock so for what it's worth- if she's not supporting you you must build - in my view- a non hurtful bridge so that you can avoid her hurt- keep it far away- and get the kind of support and love that makes you feel good - because that's what you need. toxic relationships are just that. and while i need my husband, i am much happier when he's away most of the time... and for extended periods- more than a day- i feel i can be myself and am safer because i don't unconsciously worry about when the next angry assault or intrustion will come... good luck.. you have us.. focus on what YOU need and what makes you feel good- try to give up the negative and trying to get from people who can't give- not your fault

 

[Jpac]

First I know what it's like to live with a spouse who thinks it's all in your head - I've been there, and it's not good. The illness itself is bad enough and then add on disbelief etc from family, doctors, everyone, it's crazy making.

I am curious what you mean by saying you're open to being wrong - do mean maybe you think you might not have ME/CFS? or that you think it's wrong to want the support of your wife? It's unclear to me what you mean by being "wrong".

It can be very hard to figure out what's going on healthwise with so little help from the medical profession so it can take awhile to figure out if a person has ME/CFS or not - is this what you're talking about?

I meant I’m open to being wrong about my feelings toward my wife. Maybe I should understand her

First I know what it's like to live with a spouse who thinks it's all in your head - I've been there, and it's not good. The illness itself is bad enough and then add on disbelief etc from family, doctors, everyone, it's crazy making.

I am curious what you mean by saying you're open to being wrong - do mean maybe you think you might not have ME/CFS? or that you think it's wrong to want the support of your wife? It's unclear to me what you mean by being "wrong".

It can be very hard to figure out what's going on healthwise with so little help from the medical profession so it can take awhile to figure out if a person has ME/CFS or not - is this what you're talking about?

I guess I mean I’m open to being wrong about how I feel about my wife’s lack of support. Maybe I shouldn’t expect her to understand. I had no idea this world existed until I found myself in it.

 

[Mary]

@Jpac - your feelings aren't "wrong" - they're what you feel. There's nothing wrong with wanting support, especially from the person who is supposed to be closest to you.

But unfortunately what you're going through is all too common and @Snowdrop made some very good suggestions which might help your wife understand. I used to try to imagine how I would react to someone with this illness if I didn't have it, and realized it probably would be hard for me to comprehend. But I hope I would be open at least to trying to understand it (though I have no way of knowing if that's what I would do!). It feels sometimes almost diabolical - one of the most disabling illnesses around and yet invisible and incomprehensible to almost everyone else.

This board is a lifesaver - we do understand and the support and knowledge here is priceless.

 

[nanonug]

I guess I mean I’m open to being wrong about how I feel about my wife’s lack of support. Maybe I shouldn’t expect her to understand.

A strained relationship will either end in separation/divorce or a deeper level of understanding. It's up to both of you to determine how things will evolve. From experience, I know that a deeper level of understanding requires a huge amount of openness and communication: both of you will have to be willing to "spill your guts" to each other, and there is no guarantee that you'll find only "good things."

Good luck!

PS. This thread would be more at home in the "Emotional Support" forum.

 

[manasi12]

toxic relationships are just that. and while i need my husband, i am much happier when he's away most of the time... and for extended periods- more than a day- i feel i can be myself and am safer because i don't unconsciously worry about when the next angry assault or intrustion will come...

Oh my God ...I could've said this. I'm just so relaxed and less symptomatic when he is away.My insomnia and anxiety are almost gone in his absence.

 

[Wishful]

You could try showing her some of the research from the groups that have found real medical anomalies in ME/CFS patients. That would help with skeptics who are open-minded, but of course some people will ignore evidence that conflicts with their strongly-held beliefs...

Phoenix Rising is definitely the place to come to when you feel the need for some support. People here do listen, and many of us have already gone through what you're going through, so join the crowd!

 

[Seven7]

I sent you a PM. I think what helped me the most was the visual heart rate monitor. Is a long explanation. But if you have develop any OI yet, it will let others know when you are overdoing.
It was very helpful for me how the CFs specialist explained it to my husband ( individual results vs ratios ) all standar tests are ratios.
A/B let’s say you have 1/2 = 0.5
Let’s say 50/100 is 0.5
But A is out of range and B is very low.
So the way we are tested since our inmune system is out of whack is not very effective.... there are other useful PCs of information just too much to fit on a post.

 

[Arius]

I would ask her to watch the Jennifer Brea TED talk with you. If she refuses, or still doesn't change her tune, end the relationship. You don't need that shit weighing you down.

 

[alex3619]

I guess I mean I’m open to being wrong about how I feel about my wife’s lack of support. Maybe I shouldn’t expect her to understand. I had no idea this world existed until I found myself in it.

Most patients do not really understand it till they are far along. Many people don't understand it till they see close family or friends, and it takes a lot of time. Most people do not understand it right away, even doctors. That is to be expected. Its like this is an alien disease, not something expected in a human world.