I am a recently diagnosed man and frustrated with my family's understanding

inotazo

Member
Joined
Nov 1, 2021
Messages
10
Reason
DX FIBRO
Diagnosis
10/2021
Country
US
State
IN
Thank you for great advice, Sunkacola, Jemina, Creola17, Warbucks, Marvis!
I try to communicate about my situation with wife and family(-in-law) based on your acvice. Now I have a huge debate with my wife regarding something close to whar Marvis said:
It might be that she feels she’s ‘gently pushing’ you towards recovery and not giving up and not understanding that she’s making you more ill. She may be afraid that she is losing you and acting out of fear, not realizing that she is pushing you away emotionally and sending you further into a spiral of ill-health.

My wife (and sometimes family-in-law) compares the pre-fibro me and current me, saying like, "Even though you were extremely busy, you were totally fine and lively, why did you become like that?" and "I want back the previous you." This sounds denying the current me and even my current existence. Even if I tell so and ask her to stop saying something comparing to the past to my wife directly, she just says, "I just want you to get better," "Oh, it's a way of tough love." But, saying something like that definetely hurts me (not just feeling, also causing more fibro pains!). I don't like it. I just want her to look at the current me, who try hard to get better, and the future me, who will be even better than the past pre-fibro me. Being cooperative with my wife is not straightforward.
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
708
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Thank you for great advice, Sunkacola, Jemina, Creola17, Warbucks, Marvis!
I try to communicate about my situation with wife and family(-in-law) based on your acvice. Now I have a huge debate with my wife regarding something close to whar Marvis said:


My wife (and sometimes family-in-law) compares the pre-fibro me and current me, saying like, "Even though you were extremely busy, you were totally fine and lively, why did you become like that?" and "I want back the previous you." This sounds denying the current me and even my current existence. Even if I tell so and ask her to stop saying something comparing to the past to my wife directly, she just says, "I just want you to get better," "Oh, it's a way of tough love." But, saying something like that definetely hurts me (not just feeling, also causing more fibro pains!). I don't like it. I just want her to look at the current me, who try hard to get better, and the future me, who will be even better than the past pre-fibro me. Being cooperative with my wife is not straightforward.
It sounds like you're doing so well in confronting this. I'm so sorry it's such a challenge to navigate, and for all the emotional burden that comes with that.

I think the best thing that you can do is try to make it clear that you have been diagnosed with an incurable condition - it is a condition from which people don't recover. There is management, but a big part of managing fibro means pacing and reducing stress - the things that they are simply not letting you do. Crucially, fibromyalgia does not respond well to tough love - trying to push through it will inevitably and unfailingly make it worse, and that's something we can't get around. By not grasping this, they are actively making you sicker.

Everyone diagnosed with fibromyalgia has to go through a grieving process, letting go of a number of things that they used to take for granted, and the same can be said for our loved ones. But your family need to accept this new status quo, just as you had to, because nothing they do is going to wind the clock back. However, if they support you 100% in your judgement calls each day (and in making those calls, you're proactively learning how to manage your condition) they might just be able to help you bring your symptoms down a little. It might be worth focusing in your discussion on the fact that you've had to come to terms with this being your new reality - and that's been really hard - so they need to stop knocking you backwards.

Perhaps it's also worth sharing the anecdote of someone you've been taking to online. My partner is totally on board with my condition now. It took him a while to understand -not for a lack of willing, but because he couldn't see what I feel, and we're all so used to the idea that illness is temporary - but now he just supports my assessment of what I need each day, and he's learned the value of that, because he's seen that doing it helps me actually do better. If they can do that for you, they will probably witness the same. Time to stop pushing!

Finally, you might find it useful to point out that while it is hard for all of you that you're going to have to navigate this condition ongoing, at least it isn't something progressive. You could have MS or ALS, or any number of other things that would get progressively worse over time, but you don't. They aren't going to lose you - they just have to embrace the idea that the practicalities of your life have changed. It takes some adjustment, but it can be done!

Sending so much strength, and wishing you luck in your next conversation ☀️
 
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Auriel

Senior member
Joined
Jun 8, 2021
Messages
413
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
I’m soooo sorry your going through this @inotazo, it does sound like your doing everything you can to help yourself and still trying and doing what you can, coming from a family with “issues” I completely understand with the assumption that your ok and everything’s ok, if you need your walker ( which you do) then use it, it’s really good you can work from home, some people just don’t understand the daily struggle fibro/cfs can bring, there is a fibro forum for men but there are men on this forum too (I kind of like the mix of both ☯️ on here) either way hope your well (as well as you can be with this)
🌦 🌬🌦
 
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Auriel

Senior member
Joined
Jun 8, 2021
Messages
413
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Morning @Jemima!, ahh another member with a family lack of understand (makes me sad) anyway hope your ok and the darker months aren’t getting you too down ☀️🌷☀️
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
708
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Morning @Jemima!, ahh another member with a family lack of understand (makes me sad) anyway hope your ok and the darker months aren’t getting you too down ☀️🌷☀️
I'm hanging in! Sore as hell this past week, which is very frustrating, but keeping my eyes on the prize = I am a bouncy ball, and in my world, what falls down, must bounce back up!
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
413
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Your so funny 🥰 I’m same today I’m hurting bad (dunno why) like you said we have to keep bouncing it’s the only way ☺️🙃☺️
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,658
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Thank you for great advice, Sunkacola, Jemina, Creola17, Warbucks, Marvis!
I try to communicate about my situation with wife and family(-in-law) based on your acvice. Now I have a huge debate with my wife regarding something close to whar Marvis said:


My wife (and sometimes family-in-law) compares the pre-fibro me and current me, saying like, "Even though you were extremely busy, you were totally fine and lively, why did you become like that?" and "I want back the previous you." This sounds denying the current me and even my current existence. Even if I tell so and ask her to stop saying something comparing to the past to my wife directly, she just says, "I just want you to get better," "Oh, it's a way of tough love." But, saying something like that definetely hurts me (not just feeling, also causing more fibro pains!). I don't like it. I just want her to look at the current me, who try hard to get better, and the future me, who will be even better than the past pre-fibro me. Being cooperative with my wife is not straightforward.
Jemima is right on with what she said in response to this.
I think it's natural that everyone wants "the old you back again". But i guess the thing you need to impress on them is that the old you is gone, and is not coming back. As Jemima says, you have a condition for which there is no known cure. This is a fact.

Point out to her (them) that this is a permanent change, out of your control, just as it would be if you lost a limb or became paralyzed. You can learn to manage it to the fullest, but you cannot change back to who you were before. What they are doing is like saying to someone with no use of their legs that they want that person to go running with them again, right now, and asking that question repeatedly every day. Surely no one would do that. It would be so mean and unreasonable. But what they are doing is the same thing. this is NOT "tough love". that only applies in cases when the person actually can choose to be different right now, which is not the situation here. What she and her family are doing is harassment and unkindness.

Of course everyone, including you, wants the old you back. Explain to them that if they keep reminding you of how things used to be, when you are unable to be that person any longer, is depressing, frustrating, and stressful for you. Tell them that you want the "old you" back too, but you can't make that happen and to be forced by them to dwell on it constitutes a huge hindrance in your day to day life.

Ask them to do what you have no choice but to do: accept what is. Acceptance doesn't mean approval or apathy or acquiescence or anything like that. It does mean not constantly saying that you want things to be different, go back to as it was before, not be happening. Those things, as you know, are only going to hurt you. Maybe if you put it to them like that it will help.

I wish I were there. I have had some mediation experience and I would go talk to them with you. I think they will come around in time, but I am sorry that you are having to continue to deal with this.

Also, maybe point out that you are being asked every day to be very patient with them while they say these hurtful things to you, and that you'd appreciate it if they would try having patience with you.
 
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